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DebRALOGO_NoTagline_for Convio 2
April 17, 2013
 
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debra Spring 2013 Newsletter
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Introducing our New President of the Board

debra is pleased to announce the election of Leslie Rader as President of the Board of Trustees. Leslie’s knowledge and experience is extensive, both as the mother of an EB child and from eight years of dedication to debra of America. While with debra, she created and organized the New Family Advocate Program in memory of her daughter, Lauren (JEB-H). This program serves the parents of newborns with EB by providing practical, hands-on information regarding wound care, medical supplies, insurance and the range of issues related to the care of babies with EB. She also ran and coordinated the Wound Care Clearing House for 7 years. Leslie has raised over a hundred thousand dollars through her Butterfly Benefit Fashion Luncheon and Silent Auction. This event has funded the New Family Advocate Program and the Nurse Educator Program for debra.

Her years of experience and knowledge of wound care, wound dressings, and understanding the needs of the EB community led her to her current job of 4 years, as the Coordinator, EB Affairs at Hollister Wound Care. In this role, she is responsible for the development of programs and information to assist physicians, families and patients associated with EB. She also created the EB Resource Facebook page, weekly blogs, and twitter feeds for the company.

Leslie resides in Louisville, KY with her husband of 14 years. She has two children, Rylee (11) and Drake (2). She can be contacted at leslie.rader@gmail.com.


New Secretary of the Board of Trustees

debra is also pleased to announce that Bill Cornman from National Rehab has been elected onto the Board of Trustees to serve as Secretary.  He has been assisting Epidermolysis Bullosa patients and their families for more than a decade, and spends countless hours investigating, studying and searching the market for innovative methods to accomplish what the EB community so desperately needs: new products, or ways to combine products, that will protect fragile skin and facilitate healing of persistent, recurrent wounds. We look forward to having him as part of the debra team.
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Save the Dates!
The 15th Annual Mats Wilander Benefit will take place on Thursday, October 24, 2013 at MoMA | The Museum of Modern Art in New York City. This event kicks off National Epidermolysis Bullosa Awareness Week across the country. Please mark your calendars!

The first ever debra and MW Foundation Tennis Pro-Am will take place on Wednesday, August 28, 2013 at West Side Tennis Club in Queens, New York.


For sponsorship opportunities, email: events@debra.org.

To receive an invitation to either event, please sign up here.

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Capital One Contest


FlyingPigMarathon

"I Fight" T-Shirt

From the debra Desk

New Clinical Trial

A Study in the Efficacy and Safety of ABH001 in the Treatment of Patients with Epidermolysis Bullosa Who Have Wounds That Are Not Healing

The study, sponsored by Shire Regenerative Medicine, is evaluating a dermal substitute therapy for the treatment of non-healing wounds in those with generalized EB. The study is currently recruiting participants and is being conducted in the United States and in sites around the world, including Austria, Canada (Quebec), France, Germany, Poland, Portugal and Spain. Click here for details and study locations.

For information about other EB research trials, visit: www.debra.org/research-trials


Calling All Artists!

debra wants you to create a new design for our Capital One® Visa® Platinum Credit Card. Release your inner Pablo Picasso, Ansel Adams, or anything in between. Click here for contest details.

P
roceeds from the debra Credit Card support two of our programs, the Family Crisis Fund and the Smile Fund, so don't forget to sign up for your card today!


Upcoming Local Events

2nd Annual Jogging for Jonah 5K & Fun Run: May 4 (Clemmons, NC)
The Flying Pig Charity Partner: May 4 & 5 (Cincinnati, OH)
7th Annual Butterfly Wishes for Ellie: May 9 (Atlanta, GA)

2nd Annual Love for Lucas: May 11 (Avon Lake, OH)
A Program of Love: through August 2013 (Nationwide)

Learn how you can host a Local Event by visiting www.debra.org/events


The Official "I FIGHT" T-Shirt

Show your support for debra of America by wearing our brand new, soft and comfortable "I FIGHT" T-Shirt.
  • Features the official debra tagline: I FIGHT — The Worst Disease You've Never Heard Of.™
  • Printed inside-out, so the seams won't touch your skin
  • 100% combed ring-spun cotton jersey
Order today to spread Epidermolysis Bullosa awareness!
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DebRA of America
16 East 41st Street
3rd Floor
New York, NY 10017
USA

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