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December 12, 2012
debra Winter 2012 E-Newsletter
Be Part of the Cure
this Holiday Season
In the last 12 months, debra of America, in partnership with DebRA International, allocated more than $4 million for research to treat and cure Epidermolysis Bullosa. This gives us hope this holiday season for those that suffer from “the worst disease you’ve never heard of.”

IMAGINE taking a single skin cell from a person with EB, fixing the genetic error that causes EB, making new healthy cells and putting them back into the same person, potentially curing the disease.

making EB a manageable disorder by having monthly infusions of the missing protein through a simple IV.

growing healthy new skin from a gene-corrected cell and grafting it onto wounds that never heal.

Help us provide more hope than ever before by being part of the cure. Your donation will directly impact the lives of thousands.
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  Highlights of 2012
Record Breaking Patient Care Conference (PCC)
The biennial 2012 Patient Care Conference in Orlando, Florida was the highest attended in debra history. With over 30 expert speakers and three different playrooms for the children, it was a time for learning and laughter. See the full recap and videos at

$10K from Chase Community Giving
The Chase Community Giving program provides $5 million to local charities across the country based on popular vote. Thanks to the efforts of the debra family (especially our Facebook fans), debra of America received a $10,000 grant this year! The grant will be used to fund our programs and services.

Help for More EB Families
This year, debra was able to provide support and services to a greater number of EB families. We shipped 200+ boxes of wound care supplies, provided over $15,000 in grants to cover medical expenses insurance couldn't, and sent care packages to welcome 39 new EB babies through the New Family Program.

There is still more to do
, so if you or a family you know are in need, please contact debra.

14th Annual Mats Wilander Tennis & Golf Benefit
Presented by Mölnlycke Health Care
On October 1, guests spent the day playing tennis with host Mats Wilander, then hit the links for an afternoon of golf. The evening fundraiser featured an awards ceremony for Honorees Courtney Roth & Philip Reilly, M.D., J.D., a $200,000 debra check donation to Dr. Jakub Tolar for EB research, and a silent & live auction led by Alan Kalter. Learn more about this event.

Amazing Local Events
The debra family was busy this year, holding Local Events to raise awareness for EB and funding for debra of America. During EB Awareness Week alone, there were 10 events taking place across the country.

Aubrey's Butterfly 5K, Rafi's Run, the unique Bearded 4 EB, and many other debra Local Events have received overwhelming support from their communities. Learn more about planning your own local event or starting a personal fundraising page to benefit debra. It's a great way to be part of the cure.

NYC Marathon Success Despite Hurricane Sandy
The hurricane may have cancelled the 2012 ING NYC Marathon, but it didn't stop "Team debra" from raising over $37,000! We are proud of the fundraising efforts and positive attitude of our runners, and look forward to seeing them race next year.
PCC 2012 (283)
PCC 2012 (55)



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From the debra Desk
Shop debra for the Holidays!
The debra Shop is featuring a limited edition print for the holiday season titled "Butterflies."  The original work was created exclusively for debra by New York City artist Niki Arden. Save 15% on debra Shop orders of $50 or more between now and New Year's by entering DEBRAHOLIDAY at checkout.

debra Visa Capital One Credit Card
Start giving every time you shop by signing up for the debra Credit Card. It's the best way to support the Family Crisis Fund and Smile Fund. Apply here.

Join our Facebook Community
With over 6,000 fans, debra's Facebook page is a great way to stay in touch with the EB community. Visit our This Is Who We Fight For photo campaign and contribute to the Family Photo Album.

EBCare Registry
Sign up for the first patient reported registry. The confidential information collected will be used to promote research, support policy initiatives and increase awareness.
Connect with us!

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DebRA of America
16 East 41st Street
3rd Floor
New York, NY 10017

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