debra of America Supporter Led Events

Check out a list of our upcoming events below!

Nothing close to you? We also have online fundraisers:

Interested in hosting your own event?

Looking for a debra of America event?

Supporter Led Events 2015


New York

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.

Book your bike today!


North Carolina

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.

To register for Jogging for Jonah Click Here.

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


ILLINOIS

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


GEORGIA

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

Click here to purchase tickets!


Tennessee

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


Nationwide

The Give Back Project - Shop for EB!

Visit hilariousmom.com and shop for EB! The Give Pack Project was started by Desiree Nguyen, an EB advocate. The butterfly is not perfect in it’s pattern, it has signs of being torn and broken down, but it is still beautiful and it is strong. Those who have EB deserve a cure. The deserve to live without excruciating pain. They deserve a cure. By purchasing this design YOU will be making a donation to debra.org as I will donate 50% of my profits! YOU will also RAISE AWARENESS every time you wear this design, share this design or use an item with this design on it.

View the "Beautiful Blue Butterfly" Design & Shop

Click Here to Donate

Click Here to Contact the Artist


Nationwide

Rebecca Yount's EB Bandage Bag Fundraiser

Visit Rebecca Yount's fundraising page to sponsor a bandage bag for a new EB family! Rebecca, a grandmother to a young boy with EB is hosting a very special fundraiser to directly benefit new EB families. Rebecca is raising funds in order to supply new families with a bandage bag to hold all of the wound care that they may need - at home or on the go. These bags will be distributed through debra of America's New Family Advocate Program.

Click Here to Support This Fundraiser Today!


Nationwide

Little Sweet Pea Closet : Shop for EB!

Visit littlesweetpeacloset.com and shop for EB! Little Sweet Pea Closet is donating a portion of all sales to debra of America. Stock up on adorable children's accessories, including headbands, tutus, pacifier straps, and mitten clips. All proceeds from the “Little Sweet Pea Closet: Shop for EB!” sales 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 Shop     Click Here to Donate

For questions, please contact Rebecca at rebeccahbeck [at] littlesweetpeacloset [dot] com


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