Organize a Local Event in your community to raise EB awareness and funds for debra of America.
Visit Plan Local Events. For more information, contact us at (212) 868-1573 or events [at] debra [dot] org
Attend a Debra Hosted Event.
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).
To Register, please visit: http://debra.kintera.org/Butterfly5K
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
7th Annual Midwest EB Picnic
Sunday, October 5th, 2014 (12PM-4PM)
Falcon Park Banquet Room, Palatine Park District (2195 N. Hicks Road)
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!
REGISTER here: https://www.surveymonkey.com/s/JD89LGL
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)
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).
To Register, please visit: http://debra.kintera.org/2014Knoxville5k
For more information or if you would like to help, please email events [at] debra [dot] org or call 212-868-1573.
Second Bi-Annual Second Life Charity Week
Benefitting debra of America
October 25-31, 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).
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!
Cookie Crescendo - (cookie.foodiboo)
Divalicious Design (clothing)
Something New - Props & Poses
Dane Markz (clothing)
Quantum Luxury Homes
Blue Buddah Club Supply
Designs by Sebastian
Low Prim Living
Ups & Downs Mens Wear
Asili ya Uzuri
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.
Click here to visit Valley Vintage Creations.
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
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