Past debra of America Supporter Led Events

Click Here For debra of America Supporter Led Events

To organize your very own Supporter Led Event to benefit debra of America and raise awareness for EB, please contact us at (212) 868-1573 or events [at] debra [dot] org.

Visit Plan Supporter Led Events.


The Big Ride for EB

In early 2018, Robb Freed began his 7-month, 8,700-mile cycling bike tour across the United States in honor of his son, Drake, who lost his battle with EB 8 years ago at the age of 13 months. Robb will be riding to raise money for those with EB, as well as spread EB awareness across the country.

Robb completed his bike tour on November 8, 2018.

Click Here to Learn More or Donate


4th Annual Butterfly Breakfast
Saturday, October 13, 2018
Applebees
355 Route 25 A
Miller Place, NY

Join the McCauley Family, EB advocates, and supporters for a Butterfly Breakfast Flapjack Fundraiser at Applebees in Miller Place, NY. This event is a great way to support debra of America and those with EB while enjoying a wonderful pancake breakfast! Adult tickets are $10 and Children $7. We hope to see you there!

For more information please visit https://debra.salsalabs.org/butterflybreakfast
For questions, please contact events [at] debra [dot] org or 212-868-1573 x102


4th Annual dash4debra
Sunday, May 20th, 2018 (8:00-10:30 am)
Lake Forest Academy
Lake Forest, IL

Join the dash4debra team as they race towards the finish line for EB on Sunday, May 20th in the 4th Annual dash4debra! This 5K run/walk promises a fun experience for the entire family. New this year, dash4debra is offering a virtual runner option for participants around the country! Can't make it to Lake Forest? No problem! Sign up online and run/walk in your neighborhood, your favorite trail, or even at the gym. Learn More and Sign Up

For questions please contact: fundraising [at] debra [dot] org or (212) 868-1573 x101


12th Annual Butterfly Wishes for Ellie Benefit and Silent Auction
In Honor of Ellie Tavani
Thursday, May 10th, 2018 (6:30-10:30 pm)
The Park Tavern
Atlanta, GA

Butterfly Wishes for Ellie is an annual event in honor of Ellie Tavani, a beautiful little girl who was born in April 2006 with Epidermolysis Bullosa (EB). Our 12th Annual Butterfly Wishes For Ellie Benefit and Silent Auction will be held on Thursday, May 10, 2018 at The Park Tavern in Midtown Atlanta. All proceeds from the “12th Annual Butterfly Wishes for Ellie” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB). Learn More

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x101


3rd Annual Butterfly Breakfast
Saturday, November 4, 2017
Applebees
355 Route 25 A
Miller Place, NY

Join EB Advocate Kelly and her friends, family, & supporters for a Butterfly Breakfast Flapjack Fundraiser at Applebees in Miller Place, NY. This event is a great way to support debra of America and those with EB while enjoying a wonderful pancake breakfast! Adult tickets are $10 and Children $7. We hope to see you there!

For more information Click Here.

For questions, please contact events [at] debra [dot] org


3rd Annual dash4debra
Sunday, May 21st, 2017 (8:00-10:30 am)
Lake Forest Academy
Lake Forest, IL

Join the dash4debra team as they race towards the finish line for EB on Sunday, May 21st in the 3rd Annual dash4debra! This 5K run/walk promises a fun experience for the entire family. New this year, dash4debra is offering a virtual runner option for participants around the country! Can't make it to Lake Forest? No problem! Sign up online and run/walk in your neighborhood, your favorite trail, or even at the gym. Learn More and Sign Up

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x101


Jack in the Box Schools Trike-a-Thon
Saturday, May 6th, 2017
Closter, NJ

At Jack in the Box, the children have been learning about tricycle and bicycle safety through books and stories. The staff and students are very excited to participate in this event. By taking part in such events, the children learn how to raise money to help with many children's causes. Therefore, we are asking you to sponsor your child through by clicking here. Help Jack in the Box Schools children reach their goal of raising $2,500.00 for EB! Learn More

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x101


11th Annual Butterfly Wishes for Ellie Benefit and Silent Auction
In Honor of Ellie Tavani
Thursday, May 4th, 2017 (6:30-10:30 pm)
The Park Tavern
Atlanta, GA

Butterfly Wishes for Ellie is an annual event in honor of Ellie Tavani, a beautiful little girl who was born in April 2006 with Epidermolysis Bullosa (EB). Our 11th Annual Butterfly Wishes For Ellie Benefit and Silent Auction will be held on Thursday, May 4, 2017 at The Park Tavern in Midtown Atlanta. All proceeds from the “11th Annual Butterfly Wishes for Ellie” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB). Learn More

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x101


6th Annual Jogging for Jonah
In Honor of Jonah Williams
Saturday, April 1, 2017 (2:30-5 pm)
Pinedale Christian Church
Winston-Salem, NC

Introducing "Laps for a Cure"! This year we will be combining our 5K and Fun Run into one fun-filled running (and walking!) event: Laps for a Cure!
How does it work? "Laps for a Cure" allows participants to choose however many laps they'd like to run/walk and raise money per lap completed. Each lap is about 1/4 of a mile. Complete four laps as an equivalency to the Fun Run, 12 laps for a 5K, 24 laps for a 10K, or as many as you can or want to run/walk in a one hour timeframe! Set a goal ahead of time and recruit donors to sponsor you per lap on your personal fundraising page!
Learn More

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x101


Directions Luxury Travel LLC Gives Back!
In Honor of Andy Burgy

A portion of all sales at Directions Luxury Travel LLC for cruises 5 nights or longer with any cruise line will be donated to debra of America. Reservations must be made between 3/1 and 3/31 2017. For more information please contact:

Directions Luxury Travel LLC
www.directionsluxurytravel.com
352-732-7849


3rd Annual Dig Up a Cure for EB
Saturday, March 25, 2017 9:00 AM
North Davidson High School
Lexington, NC

Join us for an afternoon of family fun and community solidarity as we play volleyball to benefit an organization that brings joy, cheer, and respite to children with Epidermolysis Bullosa and their families.
Click here to join a team, or create your own!

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x101


2017 Jerusalem Marathon, Half-Marathon, 10K, and 5K
Presented by Team Butterfly
Friday, March 17, 2017
Jerusalem, Israel

debra of America is excited to be teaming up with Team Butterfly for the 2017 Jerusalem Marathon! On March 17th, 75 runners will complete the Jerusalem Marathon, Half-Marathon, 10K or 5K, inspired by the courage of those who live with Epidermolysis Bullosa, and supported by their friends and family to reach their goal of raising $60,000. Go Team!
Click here to learn more about Team Butterfly or to support their efforts

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x101


#WeFightEB Booster Fundraiser

Get your #WeFightEB t-shirt designed by EB Mom Salena for National EB Awareness Week! T-shirts will be sold for $16 each, with proceeds benefiting debra of America.

Click Here to get your Shirt & Support This Fundraiser Today!


BookTowne Welcomes Ali Pfautz and her new Children's Book Butterflies Keep Flying
Saturday, November 12, 2016
Manasquan, NJ

Join Ali Pfautz at BookTowne in Manasquan, NJ on Novmeber 12, 2016 at 1PM for a reading and performance of her new children's book Butterflies Keep Flying. The story was insipired by the fighting spirit of her friend’s daughter, who suffers from EB. Both Ali & Ella will be available for an exclusive meet & greet and book signing after the performance. Attendance is FREE, and a portion of the book sales will be donated to debra of America.

Click here to learn more about the event!


Meet, Greet, & Eat with Eli
Sunday, October 30, 2016
Minster, OH

Meet, Greet, & Eat with Eli, an EB Awareness Event for the community and fundraiser for debra of America, will take place on Sunday, October 30th from 1-3PM at the American Legion Hall in Minster, OH. This Potluck Lunch will be hosted by EB Mom, Lindsay, and will feature and all you can eat buffet, raffle prizes, and guest appearances from Hero Strong. Come out to meet Eli and support those with Epidermolysis Bullosa! Tickets sold at the door.


2016 Pittsburgh dash4debra
Saturday, October 22, 2016
Moon, PA

Join McKesson Patient Care Solutions, proud sponsors of the Pittsburgh 2016 dash4debra, for this fun-filled 5K run/walk! dash4debra will be held on Saturday, October 22nd at Robert Morris University. Check-in begins at 8AM, and the race begins promptly at 9AM! All participants will receive a dash4debra t-shirt and race bib. Lace up your sneakers and help us kick off EB Awareness Week with a race to the finish line!

Click Here to Register


3rd Annual Knoxville 5K
Saturday, August 13th, 2016 (8:30am -12pm)
Victor Ashe Park
Knoxville, TN

Join host, Whitney S., for the 3rd Annual Knoxville 5K in honor of her nephew, Asa. Whitney says: "How lucky you are to enjoy a nice morning by having the privilege to run in a park for a 2 year old boy, Asa Madden, who struggles just to stand and walk every day. Asa hurts with every hug, every kiss, and every time he holds your hand, but this brave boy will still reach his hand out to hold yours to show you how much he cares for you. He will lean in for a kiss on the head every chance he gets. If my nephew can overcome his daily pain and struggles we can spend a few hours of our time one morning running and walking to support him. Asa may struggle to walk, but he gives our hearts the strength and dedication that we need to participate in this race. Asa is the sunshine of my life and every time I see his smiling face and those big brown eyes I know I will always happily fight for him. He gives me the strength to overcome all obstacles and fears."

The money earned from this event will go to support research, provide supplies, and help to Asa and families like him. Many patients with EB travel out of state for care and support, and many insurances do not cover the supplies needed for these patients' care. debra of America is the only national nonprofit organization dedicated to fund research and provide supportive services and programs for those with EB.

Click here to participate in the 3rd Annual Knoxville 5K!

For questions, please contact events [at] debra [dot] org


10th Annual Butterfly Wishes for Ellie Benefit and Silent Auction
In Honor of Ellie Tavani
Thursday, May 25th, 2016 (6:30-10:30 pm)
The Park Tavern
Atlanta, GA

Butterfly Wishes for Ellie is an annual event in honor of Ellie Tavani, a beautiful little girl who was born in April 2006 with Epidermolysis Bullosa (EB). Our 10th Annual Butterfly Wishes For Ellie Benefit and Silent Auction will be held on Thursday, May 25, 2016 at The Park Tavern in Midtown Atlanta. With your help, we will break last years record fundraising event where we raised almost fifty thousand dollars to benefit the Dystrophic Epidermolysis Bullosa Research Association of America (debra). All proceeds from the “10th Annual Butterfly Wishes for Ellie” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB). Learn More

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x101


Morton Gingerwood School Walk for EB
Friday, May 20th, 2016
Morton Gingerwood School
Oak Forest, IL

On Friday, May 20th the students and staff of Morton Gingerwood School in Illinois will be joining together in a walk for EB.

For questions, please contact events [at] debra [dot] org


2nd Annual dash4dEBra
Sunday, May 22nd, 2016
Lake Forest Academy
Lake Forest, IL

Please join host Megan Gosselin on Sunday, May 22nd for the Second Annual dash4dEBra to support those afflicted with EB. The money raised for this event will go to support research, provide medical supplies to families and patient access to specialists. Many patients with EB travel out of state for care and support, and many insurances do not cover the supplies needed for these patients' care. dEBra of America is the only national nonprofit organization dedicated to fund research and provide supportive services and programs for those with EB. Last year, this event raised over $13,500 to help cure EB – thank you!

For questions, please contact events [at] debra [dot] org


Rafi’s Ride
Saturday, May 14th, 2016 (2:30pm)
SoulCycle Chelsea, 98 10th Avenue
New York, NY 10011

Five years ago we started Rafi's Run, an event that brings our community together to help an incredibly brave young girl and her family in their quest to find a cure for EB, Epidermolysis Bullosa, The Worst Disease You've Never Heard Of. Now we are proud to introduce Rafi’s Ride! We are teaming up with SoulCycle to raise money for research to find a cure to this terrible disease.

We hope you will join us on May 14th in the SoulCycle Chelsea studio where we will turn it up and tap it back for an incredible cause!  Please support us as we ride to find a cure for Rafi and our EB Butterflies everywhere.

For more information Click Here.


5th Annual Jogging for Jonah
Saturday, May 14th, 2016
Pinedale Christian Church
Winston-Salem, NC

The 5th Annual Jogging for Jonah will be held on May 16th, 2016 at Pinedale Christian Church in Winston-Salem, NC. It will include a 5K chip-timed race and a one mile Fun Run, kids activities, inflatables, face painting, a raffle, food, and general family fun. All proceeds directly benefit debra of America to raise EB awareness, support families living with EB, and ultimately to find a cure.

For questions, please contact events [at] debra [dot] org


2nd Annual Butterfly Breakfast
Saturday, April 23th, 2016
Applebees
355 Route 25 A
Miller Place, NY

Join EB Advocate Kelly and her friends, family, & supporters for a Butterfly Breakfast Flapjack Fundraiser at Applebees in Miller Place, NY. This event is a great way to support debra of America and those with EB while enjoying a wonderful pancake breakfast! Adult tickets are $10 and Children $7. We hope to see you there!

For more information Click Here.

For questions, please contact events [at] debra [dot] org


2nd Annual Dig Up a Cure for EB
Saturday, April 16th, 2016
North Davidson High School (7227 Old US Highway 52)
Lexington, NC

Join us for an afternoon of family fun and community solidarity as we play to benefit an organization that brings joy, cheer, and respite to children with Epidermolysis Bullosa and their families. It will be a volleyball tournament. Each team can have six or more players. You MUST come up with a team name. I will have two separate brackets. One for the more experienced teams, and one for the not so experienced but still want to participate. You do not have to actually play to participate or get involved. Any donations will be appreciated just as much as anything else. All proceeds from “Dig Up a Cure for EB” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For questions, please contact events [at] debra [dot] org


Butterflies Keep Flying Book Launch Party & Fundraiser
Saturday, April 16th, 2016
Barnes & Noble - Chesterfield Towne Center
11500 Midlothian Turnpike
Richmond, VA

Join Ali Pfautz, The Story Lady, at Barnes & Noble in Richmond, VA for a special launch and reading of her book Butterflies Keep Flying. The book celebrates the amazing strength Ali has seen in children with EB. The main character is a butterfly that faces many challenges, yet continues to fly each day. The all-day event will include a raffle, book singings, special readings/performances with Ali at 11 AM, 1 PM, and 3PM, as well as educational talks about EB. A percentage of all qualifying sales will be donated to debra of America.

For more information Click Here.

To view/purchase the book on Amazon, Click Here.

For questions, please contact events [at] debra [dot] org


Birdies for Butterflies Charity Golf Tournament
Sunday, April 17th, 2016
Mayfair Country Club - 3536 Country Club R
Sanford, FL

This exciting Charity Golf Tournament includes a day of golf, free mimosas, lunch, raffles & silent auction, closest to the pin & longest drive contest, drink specials, and more!

For questions and to purchase tickets, please contact Amy at BirdiesforButterflies [at] yahoo [dot] com


1,000 Laces - Let's End EB!
Present - March 20th, 2016
Atlanta, GA (you can support online!)

We're selling 1,000 purple shoelaces to bring awareness to EB, a currently incurable skin disease. Ellie Tavani is an 9-year-old girl who was born with Epidermolysis Bullosa (EB). In 2011 Ellie's father, aunt & uncles started 1000 Laces to raise awareness for this horrible disease. They ran the NY Marathon that year as well as in 2013 & 2014. The plan was to sell 1,000 pairs of brightly colored shoelaces for $10 in order to raise at least $10,000 to help end EB. They raised close to $50,000 total! Starting in 2016, 1000 laces will continue to raise money by selling bright colored shoelaces. However, we hope to provide an even greater opportunity for Ellie’s community to participate in.

Click Here to Support the Fundraiser

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x101


5th Annual Rafi's Run
Sunday, March 6th, 2016
Riverside Park at West 103rd Street
New York, NY

The Fifth Annual Rafi’s Run will take place on Sunday, March 6, 2016 at 10 am (Fun Run at 11 am) in Riverside Park at West 103rd Street, New York City. All proceeds raised by Rafi’s Run will go directly to research to help find a cure for EB. The purpose of Rafi's Run is to create an event that brings our community together to help an incredibly brave young girl and her family in their quest to find a cure for EB. To achieve our goal of a world without EB, we as a community need to support the ongoing innovative research in a meaningful way. To do that, we are asking each of you to promote the purpose of Rafi's Run to your friends and colleagues and commit to try and raise $250 for research. We know that raising money can be difficult and we appreciate all of your efforts. As a community we can come together and make a huge impact on the lives of children just like Rafi. Together we can make a difference in the lives of thousands.

CLICK HERE TO DONATE

For questions, please contact events [at] debra [dot] org


4th Annual Cure for Cole
Saturday, January 23rd (7:00PM), 2016
Eclipse Riverside (4219 St Johns Ave)
Jacksonville, FL

Join us for the 4th Annual Cure For Cole benefit on Saturday, January 23rd at Eclipse Riverside in Jacksonville, FL. Organized by EB advocate Heinrich K. and Rick M., this exciting event will feature eight live performances by: MoBro Bros, Thommy Berlin/Roy Peeak, Lauren Fincham/Michael Pearson, Chasing Jonah, Tight But Loose rock band, RUFFIANS, Ursula, and Askmeificare. A $10 donation is suggested, and guests must be 18 or older to enter. All proceeds from Cure For Cole benefit debra of America and its programs and services, search for treatments, and research to lead to a cure for Epidermolysis Bullosa, (EB).


Virtual dash4debra
October 25-November 25, 2015

Join us for debra of America's first VIRTUAL dash4debra run/walk! You can participate from ANY location, at the time of your choice! Participants will receive a personalized racing bib to wear during their race. Simply put on your bib, lace up your sneakers, and head out for a run or walk in the place of your choice – your favorite park, the beach, or even the treadmill! There is no time limit or distance requirement. This virtual run/walk will take place during National Epidermolysis Bullosa Awareness Week (annually, October 25-31), and has been extended to November 25, 2015. We encourage runners, walkers, and supporters from all over to join us in our fight to end Epidermolysis Bullosa (EB)!

All proceeds from the “Virtual dash4debra” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Participating is easy! Register today to become a dash4debra runner/walker! We encourage all participants to set a fundraising goal and to ask friends and family to sponsor your run! Click here to learn more.


McKesson Medical-Surgical at Medtrade Expo
October 26-29, 2015
Georgia World Congress Center
Atlanta, GA

McKessson Medical-Surgical will be at Medtrade, the largest Home Medical Equipment Expo and Conference in the U.S., from October 26-29, 2015 in Atlanta, GA, raising awareness and money for Epidermolysis Bullosa! Stop by the McKesson booth to Spin the Wheel for EB - McKesson will donate the amount that you land on to debra of America to help improve the lives of those with EB!

All proceeds from “McKessson Medical-Surgical” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).


Wheels Healing Wounds Car Show
Saturday, October 17, 2015
RCR Racing Museum
236 Industrial Drive
Lexington, NC 27295

Join high school student Robert Cline, friend of Jonah Williams and EB supporter, at a free car show in North Carolina to benefit those with Epidermolysis Bullosa (EB). Enjoy a fun-filled day for the whole family with raffles, prizes, a silent auction, and more. All ages are welcome! This event is free to attend.

Can’t attend? Click here to donate to the event through the Wheels Healing Wounds Car Show fundraising page!

For questions, please contact 212-868-1573 x101.


Benefit for Butterflies
Sunday, October 11th, 2015
Faith Love Hope Fellowship (301 Wood St.)
Bristol, PA

Please join Hayley Winder, along with family in friends, in their fight to help raise awareness and find a cure for EB. Tickets are $25. This gives you a chance at a door prize, and includes a buffet style dinner. There will also be a chinese auction, 50/50 tickets, live entertainment and fun for all!!!! Hayley was born in 2000 with Recessive Dystrophic EB. Hayley is asking everyone to join together and help spread the word about EB and raise as much as possible to donate to a cause that needs our immediate attention. All proceeds from “Benefit for Butterflies” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

To inquire about tickets, please contact Tammy at mrs [dot] robertson2015 [at] gmail [dot] com.


Epidermolysis Bullosa Quarter Auction
Saturday, September 26th, 2015 (6:00 PM)
VFW Chesapeake City (304 Basil Ave)
Chesapeake City, MD

Join us on Saturday, September 26th for the Epidermolysis Bullosa Quarter Auction! Bid on exciting items donated by local vendors, enjoy a variety of food and beverages, and have fun, all in the name of a great cause. Advanced Tickets are $7 for 2 paddles, and tickets at the door are $9 for 2 paddles. All proceeds from the “Epidermolysis Bullosa Quarter Auction” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

To Register, or for questions, call Carolyn at (443) 655-7816


2nd Annual Butterfly 5K
In Honor of Hannah Blake
Saturday, September 12th, 2015 (10AM)
Salt Fork State Park (14755 Cadiz Rd)
Lore City, OH

We organized the Butterfly 5K in honor of a brave girl with EB. Hanna Blake, was born on August 24, 1999 with no skin on her feet and right leg. This will be a fun, family centered event with music, food and raffles. We greatly appreciate your support for our 2nd year. Whether you are a business or an individual, there is something you can do! Even if it is to start training so that you can participate in the race or simply educating yourself about EB by visiting debra.org. Please help us to make this event a great one that will continue for many years to come! Raising awareness about EB and showing our support for families affected by this disease is such an honor and a wonderful cause to be a part of.

The race course is paved so strollers and wheelchairs are welcome! All participants will receive a tee shirt, and there will be medals/trophies for placing. The park is beautiful and overnight accommodations including camping, cottages or rooms at the lodge are available by calling 740-439-2751, or visiting www.ohiostateparks.org. If you plan to stay, please make reservations as soon as you can as the park anticipates this will be a busy time for them and spaces may fill up quickly throughout the upcoming year. All proceeds from the “First Annual Butterfly 5K” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

CLICK HERE to Donate

For more information or if you would like to help, please call (740)491-0396 or email abbyroberts93 [at] yahoo [dot] com.


2nd Annual Knoxville 5k
Benefitting debra of America
Saturday, August 15th, 2015 (8AM)
Victor Ashe Park (4901 Bradshaw Rd)
Knoxville, TN

In this crazy world it is easy for people to rush by and take for granted a hug from a family member, a kiss from their parents, or holding the hand of a loved one, never knowing just how lucky they truly are. That’s why this 5k was organized in honor of Asa Madden, who struggles just to stand and walk every day. The money earned from this event will go to support research, provide supplies, and help to Asa and families like him. All proceeds from the “2nd Annual Knoxville 5K” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

CLICK HERE to Register

For more information or if you would like to help, please email events [at] debra [dot] org or call 212-868-1573.


Bayleigh’s Walk for a Cure
In Honor of Bayleigh Templeton
Saturday, June 27th, 2015
Pierce County Park, Nathan Chapman Memorial Trail (14201 86th Ave. East)
Puyallup, WA

Join us for an afternoon of family fun and community solidarity as we walk together to support those with Epidermolysis Bullosa (EB) - The Worst Disease You've Never Heard Of. Enjoy a walk along the Nathan Chapman trail; a paved trail passing through woods and wetlands, raffles, and refreshments! All proceeds from “Bayleigh’s Walk for a Cure” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

CLICK HERE to Register

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x104


Dash 4 debra
Sunday, June 7, 2015 (8:30AM)
Lake Forest Academy (1500 West Kennedy Rd)
Lake Forest, IL

Please join us on Sunday, June 7th, by running to support those afflicted with EB. The money raised for this event will go to support research, provide medical supplies to families and patient access to specialists. Many patients with EB travel out of state for care and support, and many insurances do not cover the supplies needed for these patients' care. All proceeds from "Dash 4 debra" benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

CLICK HERE to Register or Donate

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x104


EB Awareness Walk-a-Thon
In Memory of Ethan Cruz
Saturday, May 23rd 2015 (7:00AM)
Antioch Middle School (1500 D St)
Antioch, CA

Come join us in walking to support those with Epidermolysis Bullosa (EB) – the worse disease you’ve never heard of! This started out as a “Be-the-Change” project by local high school student, Iliana, and has grown to involve the rest of her school, and her community. The EB Awareness Walk-a-Thon is being held in memory of Ethan Cruz, and all of the other children with EB. All proceeds from the “EB Awareness Walk-a-Thon” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

To Donate, please visit: http://www.gofundme.com/iheartethan

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x104


4th Annual Jogging for Jonah
In Honor of Jonah Williams
Saturday, May 9, 2015 (8AM)
Tanglewood Park (4061 Clemmons Rd)
Clemmons, NC

Please join us for the 4th Annual Jogging for Jonah 5K and Fun Run. Walkers are welcome for both! In addition to the 5K and Fun Run, we'll have a great raffle, music, face painting, inflatables, food and beverages, and more! All proceeds from the “4th Annual Jogging for Jonah” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

CLICK HERE to Register or Donate

For more information please call: 212-868-1573 ext. 104
or email joggingforjonah [at] gmail [dot] com


9th Annual Butterfly Wishes for Ellie Benefit and Silent Auction
In Honor of Ellie Tavani
Thursday, May 7th, 2015
The Park Tavern
Atlanta, GA

Butterfly Wishes for Ellie is an annual event in honor of Ellie Tavani, a beautiful little girl who was born in April 2006 with Epidermolysis Bullosa (EB). Our 9th Annual Butterfly Wishes For Ellie Benefit and Silent Auction will be held on Thursday, May 7, 2015 at The Park Tavern in Midtown Atlanta. With your help, we will break last years record fundraising event where we raised almost fifty thousand dollars to benefit the Dystrophic Epidermolysis Bullosa Research Association of America (debra). All proceeds from the “9th Annual Butterfly Wishes for Ellie” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

CLICK HERE to Register or Donate

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x104


Butterfly Breakfast for a Cure
Saturday, April 25, 2015
8:00 AM – 10:00 AM (seating until 9:00 AM)
Applebee’s in Miller Place, NY
Sponsored by the Newfield, Meadows and McCauley Families

As our friends and family know, Epidermolysis Bullosa effects Donna and Bob but touches each of our family. This led us to want to help Debra of America in supporting all of the great work they provide for research and assistance to families with EB. Please join us in our fundraising effort by attending the First Annual Butterfly Breakfast for a Cure. Bring your family and friends along for a great pancake breakfast at Applebee’s in Miller Place. Come to enjoy the food, fun and fabulous Chinese Auction prizes!!

All proceeds from the “Butterfly Breakfast for a Cure” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

CLICK HERE to Donate


"What Were We Talking About?"
Saturday, March 21st, 2015 (6:00PM)
Includes 3-Course Dinner & Show
Gardencourt Louisville Seminary
Louisville, KY

"What Were We Talking About” is an original play written by Linda Stoval, Gretchen Wheeler, Gale Alexander, and Vickie Cawthra, a.k.a the Wyoming Magnolias, and founders of Magnolia Productions. It debuted at the Stage III Community Theatre in Casper, Wyoming, to rave reviews. Now, we are bringing their show to Louisville. Directed and produced by Elizabeth Huling, founder of Emerging Artist Group, the play features 4 of Louisville's favorite actresses! All proceeds benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Click here for more info


Dig Up a Cure for EB
Saturday, March 21st, 2015
North Davidson High School (7227 Old US Highway 52)
Lexington, NC

Join us for an afternoon of family fun and community solidarity as we play to benefit an organization that brings joy, cheer, and respite to children with Epidermolysis Bullosa and their families. It will be a volleyball tournament. Each team can have six or more players. You MUST come up with a team name. I will have two separate brackets. One for the more experienced teams, and one for the not so experienced but still want to participate. You do not have to actually play to participate or get involved. Any donations will be appreciated just as much as anything else. All proceeds from “Dig Up a Cure for EB” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

CLICK HERE TO DONATE

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x104


Cyndi’s Wish for a Cure
Saturday, March 21st, 2015 (6:00 AM – 12:00 PM)
17729 Hwy 613
Miss Point, MS

Stop on by this Garage Sale in support of the EB Community! Whether you need baby items, toys, or household items, you’ll find something at this sale. All proceeds from “Cyndi’s Wish for a Cure” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).


Paint Nite
Friday, March 6th, 2015 (7:00 PM)
Old St. Andrews Church (59 Tariffville Rd)
Bloomfield, CT

Old Saint Andrews is proud to continue supporting team "Racing for Ryan" and debra. Please join us for a fun paint nite while we remember Ryan David Scott. Feel free to bring a bottle of wine for you and your friends as well as some snacks to make the evening complete. We hope to see you there! All proceeds from “Paint Nite” benefit Rafi’s Run, debra of America, and research to lead to a cure for Epidermolysis Bullosa, (EB). For more information please visit www.paintnite.com.


4th Annual Rafi’s Run
Celebrating Rafi Kopelan
Sunday, March 8, 2015 (10AM)
Riverside Park, at 103rd Street, Upper West Side, NYC

The cost of doing nothing is too great.

Success is in the doing.

So we organized Rafi’s Run.

Rafi’s Run was created because there is NO CURE or TREATMENT for Rafi, a 6 year old girl from New York City who lives in pain. Knowing this, a group of friends got together to make a difference. Rafi’s Run was started to raise money for the research to find a cure for all children who suffer from EB, the “worst disease you’ve never heard of.” Since the inception of Rafi’s Run, strides in research have been tremendous and hope for a cure is stronger than ever. Please join us this year as we continue the fight. All proceeds from the “4th Annual Rafi’s Run” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information please visit: http://www.rafisrun.com/
For questions please email: contact [at] rafisrun [dot] org


Racing for Ryan Bowling Party
Saturday, February 21st, 2015
Berks Lanes (3190 Shillington Rd.)
Sinking Spring, PA

Gather some friends and family for an afternoon of bowling fun! The cost is $60/lane for up to 6 people per lane. The lane fee includes 2 hours of bowling, shoe rentals, and food and drinks for everyone. Our friends lost an infant son to this disease 5 years ago. Every year, they organize a running team “Racing for Ryan” of which our family is a part this year. We will complete “Rafi’s Run,” a 5K in NYC in March, and raise funds to help them honor their son’s memory. All proceeds from the “Racing for Ryan Bowling Party” benefit Rafi’s Run, debra of America, and research to lead to a cure for Epidermolysis Bullosa, (EB).

If you can’t attend, but would like to make a donation, you can visit our Team Webpage by clicking here: Racing For Ryan Team Page – debra of America.


Bistro 5 Dinner
In Memory of Ryan David Scott
Tuesday, February 17 (7:00 PM)
Bistro 5 (5 Playstead Road, Medford, MA)

Jenny & Scott Graham and Mary Ellen & Craig Scott, longtime fans of Bistro 5, have been “Racing for Ryan” to raise money each year for Rafi’s Run which benefits debra.org, and all of the families and children who live with EB; a rare genetic connective tissue disorder. This fundraiser is in memory of Ryan David Scott (12/26/09 – 3/16/10). All proceeds from the “Bistro 5 Dinner” benefit debra of America and research to lead to a cure for Epidermolysis Bullosa, (EB).


Cure for Cole 3
Friday, January 23 (7PM) through Saturday, January 24, 2015(6PM)
January 23 at Across The Street (948 Edgewood Ave S)
January 24 at Eclipse Riverside (4219 St Johns Ave)
Jacksonville, FL

For the third year in a row, enjoy a two-day Musical Extravaganza at Cure 4 Cole 3! Twelve bands are confirmed as performing, Saturday including Alex Affronti, Wes Cobb, Spiral Bound, Bonnie and Clyde Duo, and Lauren Fincham with Micheal Pearson. Sunday performances include Ursula, Tight but Loose, the Senses, Prideless, and Rock Hell Victory. A $10 donation is suggested, and guests must be 18 or older. All proceeds from "Cure for Cole 3" benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, contact events [at] debra [dot] org


Pay to Play for EB supporting Quinn’s Crusade & debra of America
Friday, January 16, 2015 (4:30-5:30PM)
The Little Gym (4422 Ambassador Caffery Pkwy)
Lafayette, LA 70508

Explore, play games, and enjoy quality time with friends - all to support Epidermolysis Bullosa.

For more information, email TLGLafayetteLA [at] thelittlegym [dot] com or phone: 337-504-2623


Second Bi-Annual Second Life Charity Week
Saturday-Friday, October 25th - 31st, 2014

Always wanted to attend a debra event, but haven’t been able to make it? Now’s your chance! Attend a week of virtual concerts and sales in support of debra of America in Second Life: the online virtual world. Listen to special tribute concerts, purchase debra merchandise, and enjoy a virtual New York City Simulation. All proceeds from the “Second Bi-Annual Second Life Charity Week” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

SCHEDULE OF EVENTS

TUESDAY, OCTOBER 28
1PM SLT - Mizanah Resident
2PM SLT - Nazirah Avro
3PM SLT - SINGINGIT2YA Resdient (Mark)

WEDNESDAY, OCTOBER 29
3PM-4PM SLT - DJ Laser
4pm-6PM SLT - DJ Mistiblu
6PM-8PM SLT - DJ Weeblewolf
8PM-9PM SLT - DJ Boomer
9PM-10PM SLT - CheezyDog

THURSDAY, OCTOBER 30
6PM SLT - Aerosmith Cover Band
5PM SLT to Whenever - Halloween Costume Party!

For more information, contact: events [at] debra [dot] org

A big thank you to our current Supporters:

Cerise Emor – For pulling this event together in support of EB and debra of America!

Najah (fabulouslyGlam)
Ember Adored
Harper Beresford
Cindy Gedenspire
Dyana Serenity(Diana)
ShazneyValentine Resident
Faithless Babii
zsazsazahira
Lori Novo
Andie Lavender
EmilyMarik Resident
Purr Foxclaw
WiccanBeauty Resident
Cookie Crescendo - (cookie.foodiboo)
JenJen Sommerfleck
Caryn Ashdene
Cavey Charlesworth
Savannah Porterfield
Quan Lavender
Carson Coy

Participating Vendors:

Lyrical Bizarre
Wetherby's (clothing)
Womanity (clothing)
LaGalleria (furniture)
Divalicious Design (clothing)
Something New - Props & Poses
Dane Markz (clothing)
Citrus (clothing)
GDit Jewelry
Stars!
Quantum Luxury Homes
Snowpaws
Dulce Secrets
Peponi's
Phunk
.twenty13.
Blue Buddah Club Supply
Kaerri
LivGlam
Entice
Designs by Sebastian
Low Prim Living
dirty.little.secret
Ups & Downs Mens Wear
Sources (art)
Glow Designs
%Percent
Kayly Designs
Sources
Tonic
Asili ya Uzuri
Regina


7th Annual Midwest EB Picnic
Sunday, October 5th, 2014 (12PM-4PM)
Falcon Park Banquet Room, Palatine Park District (2195 N. Hicks Road)
Palatine, IL

Time to register for the 7th Annual Midwest EB Picnic! SUNDAY OCT. 5, 12:00 pm - 4:00 pm in Palatine, IL. Speakers include Dr. Amy Paller, Dr. Mark Cannon, and reps from National Rehab and SkinniesUK! Free lunch, activities for the kids, and time to mingle with fellow EB peeps - it's always a great time!

For more information please contact Adrienne Provost at pandaprovo [at] aol [dot] com


First Annual Knoxville 5k
Benefitting debra of America
Saturday, October 25th, 2014 (8AM)
Victor Ashe Park (4901 Bradshaw Rd)
Knoxville, TN

In this crazy world it is easy for people to rush by and take for granted a hug from a family member, a kiss from their parents, or holding the hand of a loved one, never knowing just how lucky they truly are. That’s why this 5k was organized in honor of Asa Madden, who struggles just to stand and walk every day. The money earned from this event will go to support research, provide supplies, and help to Asa and families like him. All proceeds from the “First Annual Knoxville 5K” debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information or if you would like to help, please email events [at] debra [dot] org or call 212-868-1573.


Anders Pittman For a Cure of EB
Saturday, October 25th, 2014 (6PM-11PM)
The Filipe Estate (4016 S.W. Moore Street)
Palm City, FL

Join us for the first ever “Anders Pittman For a Cure of EB” event. This is a costume contest, so...DRESS TO IMPRESS! Your ticket includes Beer, Wine, Liquor, Food and Entertainment.

The day our first son was born was the best day of our lives! He was absolutely perfect and we were on cloud nine. When we came home from the hospital we noticed a few blisters on his body and were told to go to his pediatrician. No one had any idea what was causing these blisters. After being at St. Mary’s for several days, Anders was finally diagnosed with a rare genetic disorder called Epidermolysis Bullosa (EB). All proceeds from the “Anders Pittman For a Cure of EB” event benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please call 772-215-5554 or email at Lauren [at] DrewPittman [dot] com


Warriors for EB
Saturday, October 25th, 2014 (6:30PM-10:30PM)
Huber Heights Athletic Foundation (5367 Fishburg Rd)
Dayton, OH

Join us in supporting the Houck family at the “Warriors for EB” Kick-a-thon! Kick a soccer ball for all you’re worth, bid on a basket auction, take your chances in a 50/50 raffle, and more! A portion of proceeds from the “Warriors for EB” benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For questions please contact Angela Poling at angela_poling [at] yahoo [dot] com (angela_poling@yahoo .com)


debra Booth at Riverfest
Saturday, September 27th, 2014 (10AM-6PM)
Boling Park (1098 Marietta Hwy)
Canton, GA

Swing by the debra of America booth on the September (10 AM to 6PM) as we help celebrate 30 years of Riverfest. Enjoy over 200 arts and crafts vendors, concessionaires, and family entertainers, as well as an exciting children's area. Admission for adults and children 11 and older is a $5 donation at the gates, with free parking available.

For more information please visit: http://serviceleague.net/riverfest/


First Annual Butterfly 5K
In Honor of Hannah Blake
Benefitting debra of America
Saturday, September 20th, 2014 (10AM)
Salt Fork State Park (14755 Cadiz Rd)
Lore City, OH

We organized the Butterfly 5K in honor of a brave girl with EB. Hanna Blake, was born on August 24, 1999 with no skin on her feet and right leg. This will be a fun, family centered event with music, food and raffles. Since this is our first year, we really need your support. Whether you are a business or an individual, there is something you can do! Even if it is to start training so that you can participate in the race or simply educating yourself about EB by visiting debra.org. Please help us to make this event a great one that will continue for many years to come! Raising awareness about EB and showing our support for families affected by this disease is such an honor and a wonderful cause to be a part of.

The race course is paved so strollers and wheelchairs are welcome! All participants will receive a tee shirt, and there will be medals/trophies for placing. The park is beautiful and overnight accommodations including camping, cottages or rooms at the lodge are available by calling 740-439-2751, or visiting www.ohiostateparks.org. If you plan to stay, please make reservations as soon as you can as the park anticipates this will be a busy time for them and spaces may fill up quickly throughout the upcoming year. All proceeds from the "First Annual Butterfly 5K" benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information or if you would like to help, please call (740)491-0396 or email at abbyroberts93 [at] yahoo [dot] com.


EB Family Day
Sunday, September 21st, 2014 (1:30PM-4:30PM)
Children’s Hospital Los Angeles (4650 Sunset Blvd.)
Herklotz Conference Room
Los Angeles, CA

Join the staff at Children’s Hospital Los Angeles for expert guest speakers in the fields of EB & Bone Marrow Transplant research, information about community resources, to meet other kids and families living with EB, a Meet and Greet with CHLA EB Team, delicious food and fun activities for children, and fun for the whole family! Make sure to RSVP to reserve your spot.

Please RSVP to Michelle Lahat, MSW at 323-361-5469, or mlahat [at] chla [dot] usc [dot] edu


The Art Studio NY 10-Year Anniversary
Benefitting debra of America
Sunday, September 14, 2014, 12-2pm (children and families), 4-7pm (adults)
The Art Studio NY
145 West 96th Street, Suite #1B
New York, NY
www.theartstudiony.com

All proceeds from the “The Art Studio NY 10-Year Anniversary” raffle and gallery show will benefit debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Email events [at] debra [dot] org or call 212-932-8484 for more details.

Fall for Art - The Art Studio NY


Butterfly Project
One Direction Concert #ButterflyProject

August 24th, 2014
One Direction Concert (AT&T Stadium)
Dallas, TX

Kate and Emily are two debra of America Young Ambassadors who were very excited when Harry Styles of their favorite band, One Direction, tweeted a special message to our colleagues at DEBRA Ireland. This inspired them to start their very own #EBawareness project here in the United States.

The plan: To attend the “Where We Are Tour” One Direction concert on August 24, 2014 at AT&T Stadium in Dallas, Texas.

What to wear: Anything and everything red. Especially red bandanas.

What to bring: Posters that say, One Direction “Release Your Butterfly” for debra of America

Follow on Twitter: WWADallas_2014

For more information, visit: http://katethegreat497.blogspot.com/2014/01/butterfly-project-update.html

one direction butterfly project


debra Two Boots Fundraiser
Thursday, July 17th, 2014 (7pm-10pm)
Two Boots Pizza (281 Fairfield Ave)
Bridgeport, CT

Join us for dinner at the debra Two Boots Fundraiser! Enjoy a delicious pizza dinner, musical performances by Julia Wolfe, InCircles | Rock from East Quogue, NY, juanayalaperformer, Poetz Realm and more. There will be raffles, local art for sale, and a whole lot of fun! All proceeds from the “Two Boots Fundraiser” benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Click Here to Donate.

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x104


The 1st Annual CovyCon
Saturday, June 28, 2014
Fantastic Games (104 1/2 Main Street)
Columbiana, Ohio

Join us for the First Annual CovyCon Magic: The Gathering Card Game tournament and celebration! This event has been created as an organic, living memorial of an EB angel, Michael Alan Covert. Michael, or "Covy" as some may know him, may have left this Earth in June of 2013, but his legacy will live on for many years to come. All proceeds from the “1st Annual CovyCon” benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

To Register or Donate, please visit: http://debra.kintera.org/1stAnnualCovyCon

For more information, Click Here. For questions please contact: annikag15 [at] yahoo [dot] com


8th Annual Butterfly Wishes for Ellie Benefit and Silent Auction
In Honor of Ellie Tavani
Thursday, May 22nd, 2014
The Park Tavern
Atlanta, GA

Butterfly Wishes for Ellie is an annual event in honor of Ellie Tavani, a beautiful little girl who was born in April 2006 with Epidermolysis Bullosa (EB). Our 8th Annual Butterfly Wishes For Ellie Benefit and Silent Auction will be held on Thursday, May 22, 2014 at The Park Tavern in Midtown Atlanta. SAVE THAT DATE! With your help, we will break last years record fundraising event where we raised forty-seven thousand dollars to benefit the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA). All proceeds from the "8th Annual Butterfly Wishes for Ellie" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Click here to Donate

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x104


EB 5k Run and Short-Cut Walk
Saturday, May 17, 2014
Galway High School (5317 Sacandaga Road)
Galway, NY

Come on out for the first EB 5k Run and Short-Cut Walk at Galway High School! There will be food and drinks, raffle prizes, and t shirts to the first 150-200 people. If that’s not enough, you can feel free to bring your dog along, as the run is pet-friendly! Registration is $25 for adults and $15 for children(with a shirt) or free(without at shirt). All proceeds from the “EB 5K Run and Short-Cut Walk” benefit DebRA of America’s Family Crisis Fund.

For questions please contact: cezzevengeance [at] aol [dot] com


Second Life Charity Week
April 28-May 12, 2014

Always wanted to attend a debra event, but haven’t been able to make it? Now’s your chance! Attend a week of virtual concerts and sales in support of debra of America in Second Life; the online virtual world. Listen to special tribute concerts, purchase debra merchandise, and enjoy a guest appearance by Jodi Champagne, the author of “Courage Under Wraps.” All proceeds from the “Second Life Charity Week” benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, contact: events [at] debra [dot] org

A big thank you to our current Supporters:

Cerise Emor - For pulling this event together in support of EB and debra of America!

NatashaAngelfire - Second Life Blogger for donating her time to help plan this event.

Ray Burdeyna - Owner of Burdeyna Islands private island rentals for donating the property. http://www.slvirtualland.com.

Estelio Meleth of EB - Estelio Buildings Corp for assisting with the event.

Andalinae Resident - for donating the sim design.

Trunkztomorrow2011  - From Blue Buddah Club Supplies for donating donation boxes.

HauteCoutureDesign - for creating an EB sculpture for the event.

luv2 Brandi - Owner of Definitive Rock Concerts and Pirate Metal Productions for donating a tribute concert to be held at the event.

Participating Vendors:
Apparence Skins and Shapes
Style by Kira
Dulce Secrets
Punky Chicks
Phunk
Instinct Clothing for Man
Lyrical B!zzare
RueMorgue
Peponi's
LunaSea
HauteCouture Design
Glitterati by Sapphire
Dirty Little Secret
Glow Designs
HOLY SHiRT
Citrus
22769
ShadowMoon
Wetherby's
Snowpaws
Cubic Cherry
.twenty13.
Amarelo Manga
LivGlam
Stars!
Designs by Sebastian
GDit Jewelry
FuLo
RnB Designs Furniture
Senzafine
Divalicious Designs
Spellbound Hair
Rumina
KaTink
nDisPose
Something New
La Galleria
Quantum Luxury Homes
Kaerri
DaneMarkz
Estelio Buildings
7 Deadly Sins


2014 Walk for EB
Saturday, May 10, 2014 (9:00AM Registration)
Miami Whitewater Forest (9001 Mt. Hope Rd.)
Crosby Township, OH

Come on out for a walk and family friendly activities at the 6th Annual Walk for EB! The walk is FREE, but donations will be accepted to benefit DebRA of America (Dystrophic EB Research Association of America), the EB Medical Research Foundation, and Cincinnati Children’s Hospital EB Center.

To learn more, please visit http://www.walkforeb.org/


3rd Annual Jogging for Jonah
In Honor of Jonah Williams
Saturday, May 10th, 2014 (8AM)
Tanglewood Park (4061 Clemmons Rd)
Clemmons, NC

Please join us for the 3rd Annual Jogging for Jonah 5K and Fun Run. Walkers are welcome for both! In addition to the 5K and Fun Run, we'll have a great raffle, music, face painting, inflatables, food and beverages, and more! All proceeds from the "3rd Annual Jogging for Jonah" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Click here to Register!

For more information please call : 212-868-1573 ext. 104 or email joggingforjonah [at] gmail [dot] com


Celebrity Servers Night at Undo's
Tuesday, May 6, 2014 (5PM-9PM)
Undo's St. Clairesville (51130 National Road)
St. Clairsville, OH

Have you always wondered what it would be like to be served dinner by a celebrity? Find out at the Celebrity Server Night at Undo’s Italian Restaurant! You will enjoy being served dinner by the Mayor of Cadiz, the Police Chief, local news anchors, and more. All proceeds from "Celebrity Servers Night" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa (EB).

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x104


Bailey's Bash!
Friday, April 25th, 2014
Challenger Intermediate School
Wichita, KS

Come on out for hours of fun at Bailey's Bash, organized by the students and staff at Challenger Intermediate School! There will be bouncy houses, minute to win it games, a raffle, pie throwing, a dunk tank, and more. All proceeds from "Bailey’s Bash" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For questions please contact: events [at] debra [dot] org or (212) 868-1573 x104


Cross Town Classic Showdown
Friday, April 4th, 2014 (7PM)
Hersey High School Gym (1900 E Thomas St)
Arlington Hts, IL

On Friday, April 4th, 2014, the Thomas and South Middle Schools will be hosting a "Cross Town Classic Showdown" basketball game between the teaching staffs at Thomas and South Middle Schools. This year, they will be raising money for two foundations devoted to research and care for EB and FD: Debra of America and FDNow. We invite you all to come and help raise awareness and show support for the families in the local communities afflicted with these diseases, and to have a fun time. There will also be a huge raffle with great prizes! Tickets are $5 at the door, and Raffle Tickets are $1 each, or 6 for $5.

Half of the proceeds from the "Cross Town Classic Showdown" will benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

If you have questions or would like to contribute, please contact Carol Golemo at Thomas Middle School, at: Cgolemo [at] sd25 [dot] org or (847) 372-0133


Party Lite Online Fundraiser
March 17-March 31, 2014
www.partylite.biz/ashleysflames

Freshen up your home with fragrances from Party Lite, and support DebRA of America by participating in our Party Lite Online Fundraiser! EB Ambassador Ashley is donating 50% of her sales until March 31st to DebRA of America in honor of her cousin, Hanna Blake. Check out her fundraising site here: www.partylite.biz/ashleysflames.

To participate, simply select your merchandise, and enter “Hanna Blake” as your party host. All proceeds from the “Party Lite Online Fundraiser” benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, email ashee2_05 [at] msn [dot] com or call 740-942-0862


3rd Annual Rafi's Run
Celebrating Rafi Kopelan
Sunday, March 9, 2014 (10AM)
Riverside Park, at 103rd Street, Upper West Side, NYC

The cost of doing nothing is too great.

Success is in the doing.

So we organized Rafi’s Run.

Rafi's Run was created because there is NO CURE or TREATMENT for Rafi, a 6 year old girl from New York City who lives in pain. Knowing this, a group of friends got together to make a difference. Rafi’s Run was started to raise money for the research to find a cure for all children who suffer from EB, the "worst disease you’ve never heard of." Since the inception of Rafi’s Run strides in research have been tremendous and hope for a cure is stronger than ever. Please join us this year as we continue the fight. All proceeds from the "3rd Annual Rafi’s Run" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

To register, please visit: http://debra.kintera.org/2014RafisRun

For more information please visit: http://www.rafisrun.com/

For questions please email: contact [at] rafisrun [dot] org
Rafi's Run Logo


Charity Dinner at Bistro 5
Wednesday, Feb 26, 2014 (7PM)
Bistro 5 (5 Playstead Rd)
Medford, MA

Join us for a 3 course wine dinner at Bistro 5, in honor of Ryan David Scott (12.26.09-03.16.10) and Rafi’s Run. Bistro 5 serves food from the heart of a Tuscan son. Chef Vittorio Ettore will keep you coming back again and again with seasonally fresh dishes that embody the warmth and richness of his native Italy. Tickets are $75. All proceeds from this Charity Dinner benefit DebRA of America and research to lead to a cure for Epidermolysis Bullosa, (EB).


2nd Annual Century 21 1st Choice Realty, Super Bowl and Crawfish Fundraiser
Sunday, February 2, 2014
Poplar Bluff, MO

Get your game on with the 2nd Annual Century 21 1st Choice Realty Super Bowl and Crawfish Fundraiser! Enjoy food, football, crawfish, and a silent auction on Super Bowl Sunday. All proceeds from the "2nd Annual Century 21 1st Choice Realty, Super Bowl and Crawfish Fundraiser" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).


Cure 4 Cole 2
Saturday, January 25 through Sunday, January 26, 2014 (4PM)
Landshark Café at Jacksonville Beach (1728 3rd St N)
Jacksonville Beach, FL

For the second year in a row, enjoy a two-day Musical Extravaganza at Cure for Cole 2! Twelve bands are confirmed as performing, Saturday including Family Affair, FFN, Mango Fever, Poor Richards, The Senses and Boxcar, and Sunday including Hoobieu,, Whiskey Dogs, Wes Cobb, X-Geezer, Celinda Pink and The Music Factory, The Rick Arcusa Band ,and The Drifters. We will also be auctioning off a number of donated musical instruments, so make sure to check it out. All proceeds from "Cure for Cole 2" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).


Disney Half Marathon
Saturday, January 11, 2014 (5:30AM)
Walt Disney World Epcot Center
Orlando, FL

For the first year, "TEAM DebRA" will be running thorugh the iconic Disney parks in the 2014 Disney Half Marathon. We are very excited to cheer TEAM DebRA across the finish line on Saturday, January 11th, 2014. All proceeds from “Team DebRA at the Disney Half Marathon” benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).


2013 Annual EB Holiday Party
Sunday, December 15, 2013 [12-3PM]
VFW Hall 155 Searingtown Road
Albertson, NY 11507

Food, Dancing, Raffles - and of course, a visit from Santa!

What to Bring: You and your family and friends - a basket to Raffle or Dessert (or both, if you are able) – and, please bring a wrapped and labeled gift for your children that do not have EB.

Cost: EB children and their immediate families are FREE. Adults; $10 and Children; $5 (please mail admission cost to Andrea Gerstenblatt, 1 Birchwood Court, Apt. 2J, Mineola, NY, 11501)

For more information or to RSVP by November 29, please contact:
Kathy Twible: rjt516 [at] optonline [dot] net
Andrea Gerstenblatt: andieg67 [at] optonline [dot] net


Holiday Vendor Fair for EB
Saturday, November 23, 2013 [10AM-3PM]
San Diego Spine & Rehab
3772 Mission Ave, Suite 122
Oceanside, CA 92058

It’s one stop holiday shopping - featuring a variety of vendors and crafters! Free refreshments, raffle giveaways, and complimentary massages and childcare by the SDSR team.

For more information or to RSVP, please contact: Jess Jaymalin: jessalynd [at] hotmail [dot] com
Holiday Vendor Fair - Oceanside, CA


2013 Savannah Rock’n’Roll Marathon
Saturday, November 9, 2013 (7:00 AM)
Bay Street & Bull Street
Savannah, GA

Support Team Debra at the Savannah Rock'n'Roll Marathon! On November 9th, come out to support Team Debra and the EB Community, or donate to support our runners HERE. All proceeds from "Team Debra at the Rock’n’Roll Marathon" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).


A Program of Love 2012-2013
National Rural Letter Carriers Association
August 17, 2012 through October 2013

The National Rural Letter Carriers Association has selected DebRA of America as the non-profit for their year-long nationwide fundraiser. There will be Fundraisers, Contests, and Local Events organized across the country throughout 2012-2013. Please contact Kay Carter below for more information.

All proceeds from the "A Program of Love 2012-2013" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please contact: Kay Carter at lkcarter [at] embarqmail [dot] com or 252-793-2313.

National Rural Letter Carriers Logo


Gourmet Cupboard Fundraiser
October 1, 2013 – October 31, 2013
Nationwide

Kick your cooking up a notch with a selection of gourmet mixes from Gourmet Cupboard. With mixes for everything from deserts to chili, there’s something for everyone. For every mix purchased through Debra of America’s page during the month of October, Gourmet Cupboard will donate $1.50. Make sure to go through Debra of America’s page, www.thegourmetcupboard.com/fundraisers/debraofamerica. All proceeds from “Gourmet Cupoboard” benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, contact dgourmetcupboard23112 [at] yahoo [dot] com .


Merinda Mae Fundraiser
October 25, 2013 - October 31, 2013
Hartville MarketPlace (1289 Edison St NW)
Hartville, OH

Visit the Merinda Mae Children’s Boutique during National EB Awareness Week to support Debra of America. Merinda Mae will be donating all profits from October 25-31, 2013 to Debra of America. All proceeds from the "Merinda Mae Fundraiser" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, contact merindamaeboutique [at] gmail [dot] com


"What Were We Talking About?" East Coast Premiere
Saturday, October 26-27, 2013
Spring Lake Community Theatre (300 Madison Avenue)
Spring Lake, NJ

"What Were We Talking About" is an original play written by Linda Stoval, Gretchen Wheeler, Gale Alexander, and Vickie Cawthra, a.k.a the Wyoming Magnolias, and founders of Magnolia Productions. It debuted at the Stage III Community Theatre in Casper, Wyoming, to rave reviews. Now, they are once again bringing their show and their talents to the stage in support of DebRA of America and the EB community.

All proceeds from "What Were We Talking About?" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Click Here to read the official press release. For more information, please Click Here.


EB Awareness Walk-A-Thon
Saturday, October 26, 2013 (9:30 AM)
Batesville Trussell Park (Highway 35 North)
Batesville, MS

Come out and Walk for EB Awareness! Taking place on the weekend of National EB Awareness Week, the Walk-A-Thon will take place on the Walking Trail in beautiful Trussell Park. All proceeds from the “EB Awareness Walk-A-Thon” benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please contact: hfowler [at] first-heritage [dot] com


Frontiers Day Fundraiser for DebRA of America 
At the 33rd Annual Mt. Magazine Frontier Day Festival
Friday, October 5, 2013
Logan County Fairgrounds (301 West Walnut, Paris, AR 72855)

Celebrate Frontiers Day and raise money and awareness for DebRA of America on Friday, October 5 at the Logan County Fairgrounds in Paris, Arkansas. Enjoy a screening of a documentary film produced around a Civil War Re-enactment. The DebRA booth will have information about Epidermolysis Bullosa, special giveaways, raffle prizes, and a silent auction of artwork, handmade jewelry, quilts, and more. Stop by and show your support! For more information about Frontiers Day, visit: www.parisaronline.com/events/frontier-days.html

All proceeds from the "Frontiers Day Fundraiser for DebRA of America" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information or to donate an item, please contact Cindi Hunter at: meadowfairies [at] gmail [dot] com


Creek County Fair 
September 19-22, 2013 (All Day)
17808 W Hwy 66
Kellyville, OK

Come out to enjoy a Fair and support the EB Community! Stop by the EB Awareness Booth for some debra goodies while you enjoy a carnival, battle of the bands, livestock show and more. All proceeds from the “EB Awareness Booth” at the fair benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please contact: kari [dot] rogers10 [at] yahoo [dot] com


Outrunning EB: A Fundraising Party to Benefit DebRA
Saturday, September 14th, 2013 (5:30-9:00PM)
Mt. Sinai Congregational Church (233 N. Country Rd.)
Mt. Sinai, NY

Join a night of music, dancing and fun at Outrunning EB! Richard Rabatin's Whiskey Rebellion will be performing--a 7 piece blues band that plays a mix of music from Fats Waller to Trombone Shorty. There will be swing dancers from Swing Dance Long Island to liven up the event, a 50/50 raffle and door prizes. All proceeds from “Outrunning EB” benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please contact: memerson2000 [at] juno [dot] com


6th Annual Midwest Picnic for EB Families
Saturday, September 7th, 2013 (12PM-4PM)
Falcon Park Banquet Room
Palatine Park District (2195 N. Hicks Road)
Palatine, IL

Join us for fellowship, information, and fun! Hear keynote speakers Dr. Amy Paller (dermatologist) and Dr. Mark Cannon (dentist) speak about EB. The indoor banquet room is climate controlled and fully accessible with adjacent field area for outdoor fun (weather permitting).

For more information, please contact Adrienne Provost at: pandaprovo [at] aol [dot] com .


Wicked Hot Run 5K Walk/Run
Sunday, September 8, 2013 (7:30 AM)
Huntington Beach State Park (16148 Ocean HWY)
Murrells Inlet, SC

A 5K Run/Walk for health and fitness with an emphasis on family fun. The race will be held in Huntington Beach State Park rain or shine. This USATF certified 5K course is unique in that you will traverse three types of terrain; paved roads, forest trails, and sand. Tide permitting, the race will end on the sand. Beat the heat and jump in the ocean after your run! Post-race refreshments will be provided for participants. A portion of the proceeds will benefit the Dystrophic Epidermolysis Bullosa Research Association of America (www.debra.org ).

For more information, visit: Wicked Hot Run 5K Walk/Run.


Brookie's Beach Volleyball Tournament
Saturday, August 24th, 2013 (12PM)
Coach’s Pub and Grill (6201 Bishop Road)
Lansing, MI

Come compete in a team volleyball tournament! Grab 3 of your friends and play the day away, or just bring your family and friends to support the teams with food, drink, and raffle prizes. All proceeds from "Brookie’s Beach Volleyball Tournament" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please contact: angela22morgan [at] hotmail [dot] com


Walgreens Annual Co-ed Softball Tournament
Saturday, August 10th, 2013 (9AM)
Ridgeview Elementary School (252 Sam Jenkins Rd)
Johnson City, TN

Come out and play ball! Register a team to play in this double elimination softball tournament, or just come out and cheer the players on. All proceeds from "Walgreens Annual Co-ed Softball Tournament" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please contact: darthrx [at] gmail [dot] com


Butterfly Bash
Sunday, July 14, 2013 (12PM)
Elk's Lodge (339 East 4th Street)
Jamestown, NY

Come join us for food, entertainment, and an auction. All proceeds from the "Butterfly Bash" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).


Ayden Lee's 3rd Birthday Party
Saturday, June 15, 2013 (2PM - 5PM)
Waddell Park (1000 West Park Avenue)
Niles, Ohio

Hostess: Ashley Nicole (Arnold) Grimm
Theme: Elmo from Sesame Street

Wear RED in honor of Ayden’s best friend, Jaxon Boye (who has Epidermolysis Bullosa) and bring a covered dish and/or drinks to share. In place of gifts for Ayden’s birthday, please make a donation in Jaxon’s name at: http://www.debra.org/donate. All proceeds from the "Ayden Lee's 3rd Birthday Party" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).


2nd Annual Love For Lucas
Saturday, May 11, 2013
Avon Lake, Ohio
Spevock's Nautical Lanes (184 Miller Road, Avon Lake, OH)

Love For Lucas was created in memory of Lucas Patrick Hardman, who passed away at only five-weeks old from Junctional Herlitz Epidermolysis Bullosa (JEB-H). The first Love for Lucas 2012 raised over $30,000 for DebRA of America. Over 300 people attended the bowling party and countless others made donations. Most importantly, a tidal wave of awareness was created in the community.

The 2nd Annual Love For Lucas will return to Spevock's Nautical Lanes on Saturday, May 11, 2013. Tickets for the event cost $25 and include unlimited bowling, food, soft drinks and a cash bar. Children 10-and-under are free. The night will also include a silent auction, raffles every hour, brand new T-shirts for sale and a 50/50 raffle. Love For Lucas 2013 is an event for the entire family!

Visit: http://www.love4lucas.com/

Love For Lucas logo


6th Annual Walk for EB
Saturday, May 11, 2013
9:00AM (Registration)
10:00AM (Walk Begins)
Bicentennial Park in Green Township (2885 Diehl Road, Cincinnati, OH 45211)

Carson Kissell, the son of Kristy & David, was born on April 7, 2007 with a rare genetic skin disease called Epidermolysis Bullosa (EB). EB is characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor friction or trauma. People with EB are often associated with butterflies, because their skin is as fragile as a butterfly’s wings. The Walk for EB committee is a group of Carson’s closest family and friends who are dedicated to raising awareness and hosting fundraising events in hopes of finding a cure for EB.

A portion of the proceeds from the "6th Annual Walk for EB" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, visit: http://www.walkforeb.org


7th Annual Butterfly Wishes For Ellie
May 9, 2013
Park Tavern (500 10th Street Northeast, Atlanta, GA)

Butterfly Wishes for Ellie is an annual Benefit and Silent Auction in honor of Ellie Tavani who was born in April 2006 with Epidermolysis Bullosa (EB).

All proceeds from the "7th Annual Butterfly Wishes for Ellie" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Visit: http://www.butterflywishesforellie.com/

Butterfly Wishes For Ellie


2nd Annual Jogging For Jonah 5K & Fun Run
Saturday, May 4, 2013 (8:30AM)
Tanglewood Park (4061 Clemmons Road, Clemmons, NC)

All proceeds from the "2nd Annual Jogging For Jonah 5K & Fun Run" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Jogging for Jonah


2nd Annual Trip Roth Softball Blowout
March 22 (7pm-12am midnight)
March 23 (9am-12am midnight)
March 24 (9am-until end)
North Oak Park  (2008 N. Oak Street, Hammond, LA 70401)

It's that time of the year. Join us once again to play ball in Memory of Tripp Roth. Fun for the entire family: food, music, auctions, raffles, bounce houses – and softball! The United Blood Services will be onsite for those interested in donating blood. More announcements to come.  Men and Co-Ed teams are welcome to sign-up.  Entry fee is $300.  Prize for winning team. Come cheer on Tripp’s Troops!

All proceeds from the DebRA Awareness Bracelet and DebRA T-shirt sales at the "2nd Annual Trip Roth Softball Blowout " benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please contact: Richie Soley (985) 351-0390 for team entree or David Thompson (225) 315-1701 and Jessica Gibbs (225) 315-2725 for all other inquires.

Visit: www.Facebook.com/TrippsTroopsSoftball


"Team DebRA" in the LA Marathon
Sunday, March 17, 2013 (9AM)
Los Angeles, California

Amber Weir, a wedding and event planner in Santa Barbara will be running the LA Marathon for the first time for DebRA of America.

All proceeds from the "Team DebRA LA Marathon" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

Visit: http://www.lamarathon.com/ and the Personal Fundraising Page.

LA Marathon Logo


2nd Annual Rafi’s Run
Celebrating Rafi Kopelan
Sunday, March 10, 2013 (10AM)
Riverside Park, at 103rd Street, Upper West Side, NYC

All proceeds from the "2nd Annual Rafi’s Run" benefit DebRA of America and the research to find a cure for Epidermolysis Bullosa, (EB).

Rafi's Run Logo


4th Annual Jonah’s EB Auction
Thursday, February 28 (8PM EST) – Sunday, March 3 (9PM EST)
Auction Website

Jonah's EB Auction goes live on International Rare Disease Day (February 28 at 8PM EST).

The annual Jonah’s EB Auction is a celebration of Jonah Williams birthday and has become a tradition to spread EB Awareness and raise money for DebRA of America. Jonah was born with Epidermolysis Bullosa and will celebrate his 4th birthday on February 27. Starting at 8PM (EST) on February 28, the auction will go live and anyone across the country will have 72-hours to bid on exciting gift cards, electronics, accessories, handmade crafts, art and more. The auction relies on donated items, so please help make this the most successful auction yet by donating a special item – and mark your calendars for February 28!

All proceeds from the "4th Annual Jonah’s EB Auction" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

To donate an auction item or for more information, email Katie at: jonahsebauction [at] gmail [dot] com

Visit: http://jonahsebauction.blogspot.com/

Jonah's EB Auction


DebRA 550 Cord Bracelet
Warren, Michigan

Be one of the first people to wear our new DebRA 550 Cord Bracelet, designed exclusively for DebRA of America by Natalie's 550 Bracelets. Show your support for Epidermolysis Bullosa everywhere you go! These bracelets are handmade of lightweight nylon kernmantle rope with a black button closure.

Fun Fact: this type of cord was originally used in the suspension lines of US parachutes during World War II.

Click here to learn more. Please email natalie550 [at] hotmail [dot] com with any questions and to order a bracelet.

Now through Rare Disease Day on February 28, Natalie’s 550 Bracelets will donate 50% of all bracelet sales to DebRA of America. Custom bracelets, collars, leashes, flip flops, lanyards and key chains are available to order.

Thank you to Becca Carr and Natalie Hatch for collaborating on this project to raise money and awareness for Epidermolysis Bullosa.

550 Cord Bracelet


"Cure For Cole" Music Showcase
Friday, January 25, 2013 (8:30PM)

Kala Bar (331 E. Bay Street, Jacksonville, FL)

A night of live music and dancing to raise Epidermolysis Bullosa awareness and money for DebRA of America. Performances by The Senses, Rachel Warfield, Xgeezer and All Night Wolves. T-shirts will be available for purchase. $5 admission at the door.

All proceeds from "Cure For Cole" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please contact: Jennifer Garland at jennifergarland [at] bellsouth [dot] net


Annual EB Holiday Party in Nassau County
Saturday, December 15, 2012
VFW Hall (155 Searingtown Road, Albertson, NY)
Food, Dancing, Raffles, and a visit from Santa! What to Bring? You, and your family and friends - and a basket to Raffle or Dessert (or both!). If you are able, also a wrapped and labeled gift for children other than an EB child. EB children and their immediate families are FREE - all other adults, $10 and children, $5 (to help with cost of party).
Butterfly Wishes for Ellie: 4th Annual EB Awareness Walk
Saturday, November 10, 2012
Chastain Memorial Park (4001 Powers Ferry Road NW, Atlanta, GA)
Thank you for joining Ellie on Saturday, November 10th for the 4th Annual EB Awareness Walk at Chastain Park (near the tennis courts). Children are encouraged to join in on the walk. T-shirts and drinks will be provided. Official registration will be at the park between 8:00-9:00AM. Walk begins at 9AM. NOTE: There is no cost to join us on the EB Awareness Walk. Donations accepted.
All proceeds from the "Butterfly Wishes for Ellie: 4th Annual EB Awareness Walk" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).
Visit: http://www.butterflywishesforellie.com
Edgepark Jeans & Costume Day for National EB Awareness Week
Wednesday, October 31, 2012
Twinsburg, Ohio
Edgepark Medical Supplies celebrated Halloween by dressing in costume and wearing jeans to work to support National EB Awareness Week. Edgepark took this opportunity to remind all employees about the severity of EB and the importance of their role as a medical supplier in patients’ lives. In exchange for wearing a costume or jeans, each employee made a donation to DebRA.
All proceeds from this event benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).
For more information, please contact: ruthb [at] edgepark [dot] com
EB Awareness Week at Jamesville DeWitt Middle School
Celebrating Molly Gibbons
October 29-November 1
Jamesville, NY
The Jamesville DeWitt Middle School will be celebrating National Epidermolysis Bullosa (EB) Awareness Week to honor their fellow student Molly Gibbons, who has EB. Events planned include a special program on the school’s Morning Show to educate the students and staff about EB, a Halloween costume contest, Denim Day, butterfly tattoo and EB stamp sale and more.
All proceeds from the "EB Awareness Week at Jamesville DeWitt Middle School" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).
For more information, please contact: Sheri MacKnight at smacknig [at] jd [dot] cnyric [dot] org
EB Awareness Week
Across the United States
Thursday, October 25 - Wednesday, October 31, 2012

National Epidermolysis Bullosa (EB) Awareness Week, as legislated by the United States Congress in 2006, is recognized annually as the last week in October. It is a time to increase awareness of EB, to promote the need for a cure, and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease. Click Here for more information.

Organize a DebRA Local Event in your town during "EB Awareness Week!" For more information, please contact: events [at] debra [dot] org or 212-868-9296.

EB Awareness Week Logo 2012


EB Awareness Week at Maries R-1 School
October 25 – October 31, 2012
Vienna High School, Vienna, MO
Maries R-1 School will raise awareness of Epidermolysis Bullosa (EB) and DebRA of America during national EB Awareness Week. Benefiting a student who suffers from EB.
EB Awareness American Legion Post 130
October 25-31, 2012 (All Day)
699 W. Hickpochee Avenue, LaBelle, Florida
We will have a donation jar and information about EB during National Epidermolysis Bullosa (EB) Awareness Week. This is a local veterans club supporting two of its junior members and educating the community.

All proceeds from the "EB Awareness American Legion Post 130" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB). For more information, please contact: Myra Johnson at msk1173 [at] gmail [dot] com or 863-612-5591.


Xtreeme EB Awareness Challenge
Tuesday, October 30, 2012
"Xtreeme Challenge" (9499B North Washington Street, Thornton, CO)
Join me at "Xtreeme Challenge" in Thornton, Colorado on Tuesday, October 30 from 6-8PM to raise awareness for Epidermolysis Bullosa (EB). Together we will raise funds for DebRA, an amazing organization supporting babies and families living with EB, as well as research for a cure. Enjoy activities, challenge friends, learn about EB and these beautiful families. Don't forget your costume, there will also be a raffle.

All proceeds from the "Xtreeme EB Awareness Challenge" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB). For more information, please contact: Viviana Nickerson at (720) 987-4064 or vnickerson87 [at] gmail [dot] com


A Cupcake A Day Will Keep EB Away
Saturday, October 27 & Sunday, October 28, 2012
Lazy Daze Cafe (10 S Johnson Ave., Indianapolis, IN)
McKay Kite discovered the film, "The Boy Whose Skin Fell Off" and admired Jonny Kennedy’s courage and determination to bring awareness to his Epidermolysis Bullosa (EB). McKay is an inspired baker and will be selling her baked goods on Saturday, October 27 and Sunday, October 28 at Ellenburger Park. Stop by, say hello - and buy a cupcake for EB!

All proceeds from the "A Cupcake A Day Will Keep EB Away!" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB). For more information, please contact: McKay Kite at mckay [dot] kite [at] yahoo [dot] com or 317-724-9532.


New Baden Park EB Awareness Walk
Saturday, October 27, 2012
New Baden Park, New Baden, IL
Walk for EB in New Baden Park, Illinois during the national EB Awareness Week. T-shirts will be sold to fundraise for DebRA of America.
All proceeds from the T-shirts sold at the "New Baden Park EB Awareness Walk" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermyloisis Bullosa, (EB).
For more information, please contact: Jennifer McCaughtry at grantland_pooh [at] hotmail [dot] com or 618-954-8439.
Ben Wiley Jr. Turns 1
Saturday, October 27, 2012
The Arcadia Elks Lodge - Arcadia, Florida
Please join Ben and his family to celebrate his 1st birthday during national EB Awareness Week. There will be a BBQ, Silent Auction, Bounce House, Raffles, Cake & Ice Cream – and learn more about Epidermolysis Bullosa (EB).
All proceeds from the Silent Auction will benefit DebRA of America and the programs/services, treatments, and research for a cure for, Epidermolysis Bullossa (EB). For more information, please contact: Sirena Wiley at 863-990-9356
EB Awareness Shands Hospital
October 25-26, 2012
Shands Hospital at the University of Florida (Sun Terrace) - Gainesville, FL
The dermatology interest group and resident physicians will have an information table on the Sun Terrace at Shands Hospital at the University of Florida from 10/25-10/26 to raise awareness and distribute pamphlets on Epidermolysis Bullosa (EB).
For more information, please contact: Brett Keeling at bkeeling [at] ufl [dot] edu
EB Awareness Week 3rd Annual @EBResource 24-Hour Tweet-a-Thon
October 25-26, 2012

Starts at 8AM EDT on October 25 – ends at 8AM on October 26
EB Resource/Hollister Would Care will be launching their 3rd Annual 24-Hour Tweet-a-Thon, titled: "EB: A Day in the Life”" on Thursday, October 25 at 8AM EDT — in honor of the nationally and internationally recognized #EBAwarenessWeek.

For 24-hours straight, @EBResource will be tweeting every hour about EB and all you have to do is ReTweet them using hashtag #ebfund!

For every Tweet and ReTweet during the 24-hours using the designated hashtag #ebfund, Hollister Wound Care will donate $1 dollar — up to $2,500 — to support DebRA of America and EB families. Let's work together to spread EB Awareness across the Twitterverse and beyond.

More details below:

  • You must be on Twitter to participate. It's free to join. Open your account today here:
    https://twitter.com

  • Follow @EBResource + @DebRAofAmerica

  • Search for hashtag #ebfund on Twitter's homepage

  • Anytime between 8AM EDT (Oct. 25) and 7AM (Oct. 26), you can help us by ReTweeting @EBResource updates to your followers or sending your own tweets using hashtag #ebfund

Click Here for more information or contact: events [at] debra [dot] org


Putting Our Fight's Up for EB Awareness
October 25, 2012
One12 Downtown - 112 Tipton Street, Johnson City, TN
Join Ms. Bailey Danner at One12 Downtown this Thursday, October 25 for lunch or dinner. Half your purchase of a stir fry meal will be donated to benefit DebRA of America. Please come out and show your support and help us, "Fight EB."
All proceeds from the "Putting Our Fight's Up for EB Awareness" benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB). For more information, please contact: Ronnie Danner at dannerrt [at] msha [dot] com or 423-794-8320.
First Annual EB TRX-A-THON
Saturday, October 20, 2012
Ascension Fitness (3501 Severn Avenue, Metairie, LA)
Honoring Tripp Roth
The Goal: Raise money and awareness of this horrible disease affecting 1 out of every 50,000 live births. 100% of your donations to the TRX-A-THON will go to a Baton Rouge family with two children suffering from EB.

What Is the TRX-A-Thon? 8-hours straight of TRX training, organized in 30-minute sessions over the 8-hours. Each session can accommodate up to 15 people per session. Come get a hard-core workout, while raising money for children suffering from EB. No TRX experience is necessary and Ascension Fitness Certified Trainers will be leading each 30-minute session.

For more information, please contact: Jamie McIntyre at 504-304-6205 or jamie [at] ascensionfitnessnola [dot] com
Visit: http://ascensionfitnessnola.com/eb-trxathon.html
Learn more about Tripp Roth’s life at: www.randycourtneytripproth.blogspot.com


Aubrey's Butterfly 5K Run/Walk for EB
Sunday, October 21, 2012
Dimondale, Michigan
"An Event to Remember" in honor of Aubrey Joy Oberlin (Oct. 6 - Nov. 17, 2010)
In 2011 Aubrey’s Butterfly 5K Run raised over $10,000 for DebRA. Let’s make 2012 even bigger!
All proceeds from "Aubrey's Butterfly 5K Run/Walk for EB" benefit DebRA of America and the programs/services, treatments, and research for a cure for, Epidermolysis Bullossa (EB).
Click Here to join our fundraising team!
Click Here for event registration and information.
Be The One video.


5th Annual Midwest EB Picnic
Saturday, September 29, 2012
Palatine, IL
The 5th Annual Midwest EB Picnic is a social event for EB patients and their families - an opportunity to share fun, fellowship and information. Chicago-area EB Dermatologist Dr. Amy Paller (Chair of Dermatology and Professor of Pediatrics at Northwestern University's Feinberg School of Medicine) and Pediatric/EB specialist dentist Dr. Mark Cannon (Professor in the Division of Dentistry at Northwestern University's Medical School) provided the latest in EB news and treatment information.
Click Here to learn more about Dr. Amy S. Paller, MD.
Click Here to learn more about Dr. Mark L. Cannon, D.D.S.M.S.
For more information, please contact Adrienne Provost at pandaprovo [at] aol [dot] com or 847-202-9399 or Wendy Dittman at wdittman [at] wowway [dot] com.


DebRA Local Event for The Smile Fund
Thursday, August 23, 2012
Hauppauge, NY
Food, music, raffles, and live painted murals to raise awareness and donations for DebRA’s new program, The Smile Fund. Please click here to learn more.
All proceeds from the this Local Event benefit DebRA of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).
Maciefest 2012: Epidermolysis Bullosa 5K Run/Walk
Saturday, August 11, 2012
Le Mars, Iowa
All proceeds from the "Maciefest 2012: Epidermolysis Bullosa 5K Run/Walk" benefit DebRA of America and the programs/services, treatments, and research for a cure for, Epidermolysis Bullossa (EB). For more information, please contact: Katie Majeres at jkmajeres [at] hotmail [dot] com or 712-540-2173
Christmas in July Bike Show
Saturday, July 28, 2012
Putney's in Tucson: 6090 N. Oracle Rd., Tucson, AZ
Putney's of Tucson, along with their business associates, sponsored a Bike Show in July to raise public awareness of EB. The goal of this event, which is the first of two events scheduled for this year, will be to raise awareness through patrons, neighboring businesses, friends and family.
All proceeds from the "Christmas in July Bike Show" benefit DebRA of America and the programs/services, treatments, and research for a cure for, Epidermolysis Bullossa (EB). For more information, please contact Leslie Schaefer at 520-971-9168
Original Play: What Were We Talking About?
Friday, July 20 - Sunday, July 22, 2012
Four long time friends collaborated to write an original two act play confirming the power of friendship and personal storytelling. At once humorous, heart-wrenching and healing, the lives and challenges of these very different women are revealed through their stories in What Were We Talking About?. The power of face to face communication and the comfort of friendship are validated as they learn that, while life may be unfair, how they handle the unfairness is what defines them.
All proceeds from "What Were We Talking About?" benefit DebRA of America and the programs/services, treatments, and research for a cure for, Epidermolysis Bullossa (EB). Click Here to learn more about Ella.
For more information, contact Gale Alexander at gale [dot] alexander [at] gmail [dot] com or 307-234-9807.
The Harlee Bass/EB Awareness Golf Tournament
Saturday, July 14 & Sunday, July 15, 2012
Haleyville Country Club - Haleyville, Alabama
All proceeds from the "The Harlee Bass/EB Awareness Golf Tournament" benefit DebRA of America and the programs/services, treatments, and research for a cure for, Epidermolysis Bullossa (EB).
For more information, please contact: Ronnie Taylor at 205-269-0177
Car Wash for a Cure
Sunday, July 8, 2012
Jiffy Lube: 12208 Merdian East, Puyallup, Washington
All proceeds from the “Car Wash for a Cure” benefit DebRA of America and Epidermolysis Bullossa (EB).
For more information, please contact: Ashley Templeton at bayleighsmommy2010 [at] gmail [dot] com
Miller’s Ale House Softball Tournament for DebRA
Sunday, June 24, 2012
Jacksonville, Florida
"Take a swing out of EB" with Miller's Ale House at their annual Softball Tournament on Sunday, June 24 in Jacksonville, Florida. Proceeds from the Tournament will be donated to DebRA of America in honor of families struggling with EB. Cole Garland, a local resident with EB will be honored at the closing ceremony. For more information, please contact: Jennifer Garland at jagarland [at] mail [dot] clay [dot] k12 [dot] fl [dot] us
Cowboy Up For The Cure
Saturday, June 9, 2012
Livingston, Louisiana
The students of the Walker High School Agriscience Department presented Cowboy Up for the Cure on Saturday, June 9 in Livingston, Louisiana at the Livingston Parish Fairgrounds. Proceeds from the rodeo will be donated to DebRA of America. The rodeo included bull riding, barrel racing, a calf scramble for the kids, concession stands - and fun for the entire family!

Charlie's 1st Birthday
May 21, 2012
Our family has been following Courtney Roth's blog chronicling her son Tripp's journey with EB. Knowing the pain and grief they experience makes us even more grateful for Charlie's health and all the everyday, normal things that we can so easily take for granted. We can think of no better way to celebrate Charlie's 1st birthday than by contributing to an organization that helps so many families in such profound ways.
For more information Click Here.


Butterfly Wishes For Ellie
May 16, 2012
Atlanta, GA
Butterfly Wishes for Ellie is an annual Benefit and Silent Auction in honor of Ellie Tavani who was born in April 2006 with Epidermolysis Bullosa (EB). Funds raised will benefit the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA). DebRA will use these funds for research and funding to assist families like ours who are dealing with the daily struggles associated with EB.
To learn more Click Here.
Love For Lucas
Saturday, May 12, 2012
Avon Lake, Ohio
Spevock's Nautical Bowling Lanes
This event was in memory of our son Lucas Patrick Hardman, who passed away at only five weeks old from Junctional Herlitz EB. Please help the butterfly children fly free!
Click Here for the Butterfly Child video.
For more informaion Click Here.
For Sponsorship opportunities Click Here.
For more information, contact Brian and Nicole Hardman at LoveForLucasEB [at] gmail [dot] com
Jogging For Jonah
Saturday, May 12, 2012
Clemmons, North Carolina
Tanglewood Park

Helping Find a Cure for EB in Honor of Jonah Williams.
For more information Click Here.


Walk for EB
Saturday, May 5, 2012
Cincinnati, Ohio
Bicentennial Park
Walking in the hopes of finding a cure for EB
For more information, please visit: www.walkforEB.org
7th Annual Butterfly Fashion Show Luncheon and Silent Auction
Saturday, March 17, 2012, 11:00am
St Matthews, KY
The Olmsted (3701 Frankfort Avenue)
For more information Click Here.
To learn more about this event contact Leslie Rader at (502)299-0862, or via email at leslie [dot] rader [at] gmail [dot] com

Rafi’s Run
Sunday, March 11th, 2012, New York, New York
Website: www.rafisrun.com
Watch the Video


Rock and Roll Half Marathon
Sunday, March 4, 2012, New Orleans, LA
The run is organized in the memory of Tripp Roth to heighten EB awareness and to raise money for DebRA of America. To learn more about this event click here.
To join the team and raise money for EB awareness contact scottwalker [at] hearst [dot] com.
1st Annual Tripp Roth Memorial Softball Blowout
Friday, February 24, 2012 at 6:00pm until Sunday, February 26, 2012 at 5:00pm
Gather to play ball in honor of little Tripp and to help raise awareness of EB!
Join us on Facebook: www.facebook.com/TrippsTroopsSoftball
Any contributions can be sent to Mollie Walker at 14398 Sandy Bluff Drive, Port Vincent, LA 70726
The 3rd Annual Jonah's EB Auction
Friday, February 24 2012 8pm EST -Monday, February 27 2012 Through 9pm EST
Jonah's EB Auction is auctioning off over 160 items that were donated in order to raise money for EB awareness and research. Click Here to view auction items and bid http://jonahsebauction.blogspot.com/.
EB Awareness T-Shirt Sale
February 28th - March 4, 2011, 10:45 am – 12:30 pm
Upper Arlington High School, Upper Arlington, OH
For her senior capstone project, Michelle Navarre is promoting EB Awareness by selling t-shirts which she has designed. All profits from the t-shirt sale will go to Debra. The t-shirt sale will be ongoing, before and after this event. Click here for details
Curing EB One Mile at a Time at the Chicago Marathon
Michael Marek ran the Chicago Marathon to raise awareness about EB and Debra.
October 10, 2010
Chicago, IL
Click here for photo
Butterfly Benefit
Fashion show and silent auction
March 27, 2010
Louisville, KY
Facebook Photos
One in a Million
Throughout 2010
Miami, Florida
One in a Million is a yearlong celebration at the University of Miami whose mission this year is to raise awareness about EB and raise funds for Debra of America.
Click here for more information and photos

Valley Vintage Creations Lockets for EB
15% of sales benefit debra
Signal Mountain, Tennessee

Jewelry designer, Kelsey Hill Worley’s antique brass filigree lockets are handcrafted in the Tennessee Valley. Purchase one today and 15% of each sale will go to support Epidermolysis Bullosa and debra of America. You can specify your charm of choice: key, butterfly, or jeweled ball.

15% of each sale on Kelsey’s website benefits debra of America and its programs/services including its search for treatments (making them commercially viable and available), and research to lead to a cure for Epidermolysis Bullosa, (EB).

For more information, please contact: events [at] debra [dot] org

Butterfly Locket for DebRA





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