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Monday 9am - 5pm Tuesday 9am - 5pm Wednesday 9am - 5pm Thursday 9am - 5pm Friday 9am - 5pm

debra of America

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debra of America

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The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) is the only U.S.
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debra of America is the leading national nonprofit improving the lives of those impacted by Epidermolysis Bullosa (EB) —"The Worst Disease You've Never Heard Of." nonprofit providing all-inclusive support to the EB Community, through funding research for a cure and by providing free programs and services for those with Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™ Visit: debra.org

10/12/2026

Mark your calendar: EB Awareness Week is October 25–31.

Whether you have EB, love someone who does, or are just learning about it, here are some ways to get involved:

📖 Share your story, in your own words
📱 Post from our Social Media Toolkit
📄 Share our informational flyers
🍎 Bring Michael’s Story to your child’s classroom
🎉 Host a bake sale, game night, or online fundraiser

Find everything you need at https://debra.pulse.ly/cfdixvrakn

(📸: The amazing Amora, living with EB.)

10/09/2026

What a day on the course! ⛳

This past Sunday, supporters came together for Par for a Purpose: The debra Golf Classic in Scottsdale, AZ. The desert wind made every swing a challenge, but it couldn’t slow down our golfers, including EB Community members and sisters Kathryn and Carly Rasmussen.

We also presented two Jouni Uitto Impact Awards, to the Phoenix Children's EB Clinic and Dr. Andrew South, for their impact on EB care and research.

Read the highlights in our latest blog post: https://debra.pulse.ly/tdgcmnypyo

A special thank you to the event's generous sponsors: Pilot Thomas Logistics , Abeona Therapeutics Inc , Stage Analytics, Brightly Property Care, and GoldBook Financial .

10/08/2026

This Sunday, 11 runners take on the Bank of America Chicago Marathon for the EB Community, and they’ve already raised over $30K to fuel debra’s mission! 🏅

They’ve spent months training for these 26.2 miles. Please join us in cheering them on:

Ivona Blauhorn
Elle Clausen
Ebrahim Ghazvini Zadeh (pictured)
Rosario Gonzalez
Sam Heavenrich
Abigail Kieffer
Ellen McGrath
Aimee Myers
Andrew Straznitskas
Stephanie Tavani (pictured)
Daniel Torres

✨ Support their efforts by donating at https://pulse.ly/fxlddiipyi

10/07/2026

The latest in EB research is now available to watch from this year's debra Care Conference (DCC) in LA! 🔬

Our third batch of recordings is live, covering clinical trials, emerging therapies, genetics, squamous cell carcinoma, and new insights into EB Simplex. Thank you again to our researchers, clinicians, community leaders, and sponsors for sharing their work with our EB Community!

🎥 Watch now at https://pulse.ly/zqtfzbxivb

10/06/2026

"I'm running the TCS New York City Marathon because I believe 'the harvest is plentiful, but the workers are few.' There's power and strength when we join together. Many need help, healing, and something to cling to in a time of need. We're better together than apart. Thank you to debra and the entire EB Community. Let's stand together!"

Malcolm Stewart is lacing up with for the second year in a row in honor of his son, Miles, who lives with EB. He's already 70% of the way to his fundraising goal!

Help him cross the finish line: https://pulse.ly/dmxe2rmcjg

10/05/2026

Upcoming Webinar! 🧬

Join us to hear from Lindy Ross, MD, Clinical Assistant Professor and Director of Pediatric Dermatology at the University of Texas Medical Branch, and Charlotte, an EB Community member and Strong Together Network™ participant who was treated with ZEVASKYN® (prademagene zamikeracel), in a panel discussion about their experiences with the treatment.

📅 Thursday, October 22, 2026
⏰ 2:00 – 3:00 PM EST
🔗 RSVP: https://pulse.ly/wnn46aovtz

10/02/2026

"EB will only be a part of your child's story, not their whole story." – Ashley & Ricky Lynch 🦋

When Leah was diagnosed with EB as a newborn, her parents worried about everything it might take from her. Instead, she has shown them again and again how much joy and love she has to give.

Ashley and Ricky had wanted to host a walk for years, but it always felt overwhelming. Last year, they took the leap, and seeing their community show up for Leah encouraged them to do it again.

Join the Lynch family on Saturday, November 7 in Lake Butler, FL for Hope in Her Footsteps: Leah's 2nd Annual Walk for EB Awareness. 💜

RSVP and get to know Leah, the little girl behind the walk, at https://debra.pulse.ly/yrfmoqfyf0

10/01/2026

Last call! ⏰ Enrollment for debra's virtual Youth Mentorship Program closes tomorrow, Friday, October 2.

If you've been meaning to sign your child up, now's the time! The program is open to all youth in the US, with suggested ages of 8–17.

Learn more and enroll at https://pulse.ly/ingfewtzgw

09/30/2026

More sessions from this year's debra Care Conference (DCC) in LA are now available to watch! ✨

The second batch of recordings is live, covering anemia, oral health, GI challenges, pain management, and more. Thank you again to our community leaders, researchers, clinicians, and sponsors for sharing their expertise with our EB Community!

🎥 Watch now at https://pulse.ly/v7hcibzhpl

Stay tuned for more videos coming your way!

09/25/2026

One month to go until the second annual Flutter for a Cure 5K in Wentzville, MO 🦋

Hosted by ER nurse Alysha Cannon, this special event honors EB angel Elliana Rose Campbell (pictured with her loving family). Elliana was just 10 months old when she passed away, but in her short time here she brought immeasurable light and love to the world, and she continues to inspire action today.

Bring your friends and family to Quail Ridge Park for a family-friendly walk raising funds and awareness in the fight against EB.

📅 Saturday, October 24, 2026
📍 Quail Ridge Park | Wentzville, MO
🌍 Virtual participation also available!
🎟️ RSVP: https://salsalabs.pulse.ly/jf4r38cdvt

Address

1023 Walnut Street, Suite 100
Boulder, CO
80302

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+12128681573

Website

http://debra.org/

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