Community Council

The Community Council has been created to educate and inform the EB community with reliable and current information from trusted specialists and researchers in the field. It has representation of various viewpoints and values from within the EB community. The Community Council is open to all members of the EB community (individuals with EB, families, advocates, doctors, supporters, etc). Throughout the year, the Community Council will host a variety of discussions on a specific topic related to EB. Topics could include current research, clinical trials, advocacy, genetics, and best practices.

 

Our 2017 Community Council Sponsors are:

Abeona Therapeutics

 

 

 

 

 

In Mid-October, we held our second Community Council of the year, a series of podcasts about current clinical trials. Leading EB researchers discussed the following clinical trials in the video podcasts below:

 

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Efficacy and Safety of SD-101 Cream in Patient with EB with John C. Browning, Chief of Dermatology at Children’s Hospital of San Antonio

 

More information about the study can be found at ebstudy.com. Information about the trial is also found at

www.clinicaltrials.gov (Identifier: NCT02384460).

Following Dr. Browning’s Presentation, we collected questions from our online audience via Facebook and email. Here are the questions and Dr. Browning’s answers:

1. With the Cream applications – are they designed to toughen the skin in any way to assist with future wounds? I.e. make certain areas stronger and able to produce less wounds?
Answer: The cream helps to heal wounds and reduce itching. It does not make the skin stronger or EB go away.
2. Would a wound that closes easily but is constantly re-blistering and re-opening be considered a chronic wound? 
Answer: No, it would not be allowed if it has been healed.
3. When will the trial be over and the product available for everyone? 
Answer: As soon as we enroll the necessary number of subjects as required by the FDA. Hopefully soon, but we need the support of willing subjects to make that happen!

 

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FCX-007 Program discussion with John Maslowski, Senior Vice President of Scientific Affairs

 

You can also access John Maslowski’s presentation here.

 

Following the presentation, we received questions from the EB Community. In the podcast below, we provide all the answers. 

 

Stanford Medicine

Gene Therapy Clinical Trial for RDEB Patients at the Lucile Packard Children’s Hospital at Stanford University with Dr. Jean Tang

Part 1 Video: Focuses on Stanford’s EB Resources and Team

The videos and resources mentioned in the video above can be found on this page for Stanford Children’s Health.

Jean Tang’s presentation can be found here.

Part 2 Video: Gene Therapy Clinical Trial

 

 

 

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Gentamicin Therapy for RDEB Patients with Nonsense Mutations with David T. Woodley MD & Mei Chen PhD

Part 1:  Introduction and General Information about Gentamicin Therapy

Part 2: Specific Information about the Trial Design and Criteria

Their presentation can be found 10-13-16-webinar-update

 

Following their presentation, we collected questions from our online audience via Facebook and email. Here are the questions and Dr. Woodley and Dr. Chen’s answers:

1. With the Cream applications – are they designed to toughen the skin in any way to assist with future wounds? I.e. make certain areas stronger and able to produce less wounds.

Answer: DEB is characterized by skin fragility and this skin fragility is due to the lack of functioning anchoring fibrils. By generating new type VII collagen and new anchoring fibrils at the dermal-epidermal junction of the RDEB patient, we would predict less skin fragility. That is, less new trauma-induced skin blisters. In our completed study, we showed that the generation of new type VII collagen and anchoring fibrils in the gentamicin treated test sites was also associated with rapid closure of open erosions, a reduction in new blister formation, and longer lasting, more durable closure of skin wounds.

2.  What age were the patients who participated in the study?

Answer: In our completed initial trial, we enrolled three adults and two children (age 8 and 15).

3. Is this a phase type study?

Answer: Yes.

4. What ages can be accepted into the trial?

Answer: We can enroll patients of any age in the topical application arm of the study.

5. How does the body not develop Gentamicin resistant bacteria?

Answer: With the chronic use of gentamicin, bacterial resistance may occur, but the anti-bacterial properties of gentamicin are independent from its ability to induce readthrough of nonsense mutations. Therefore, we believe the gentamicin will maintain its ability to read through nonsense mutations. If gentamicin-resistant bacteria occur in a wound, one would have to culture the wound and do antibiotic sensitivity testing and choose an antibiotic to which the bacteria are susceptible.

 

 

 


In May we held our bi-annual Community Council “Beyond Blisters: Managing Distress in EB.” We got a chance to talk with experienced professionals who shared their expert advice. You can view the presentation Community Council May 5.17.2016 and listen to the recording.

 

 

 

Our presenters included:

  • Dr. Rebecca Bodán is an Assistant Professor in the School of Nursing at California State University, Fullerton. She was trained at the University of Pennsylvania and the University of California, Los Angeles as a clinician and researcher. Her research has focused on biological mechanisms of depression in those with chronic disease, as well the use of cognitive behavioral therapy as a means for managing depression in vulnerable populations. In 2013 she gave birth to Clara, who was born with a de novo KRT5 mutation, resulting in a severe generalized form of EBS. Like all EB parents, Dr. Bodán has done her best to provide high quality care for her daughter, piecing together what she has learned from EB clinicians, patients, and care givers to care for Clara. As her daughter has grown she has become increasingly frustrated with the lack of focus on the psychosocial impact that EB can have on patients and families alike. She hopes to move the conversation forward in the hopes that those living with, and caring for, those with EB may one day receive more comprehensive care.
  • Jennifer Innes has a Masters Degree in Marriage and Family Therapy and Art Therapy. She also lives with Recessive Dystrophic EB. She works with children of different backgrounds and works with children living with EB.
  • Traci Stein, PhD, MPH, is a psychologist and health educator who has worked in New York City Hospitals, teaches doctoral psychology students about working with the medically ill, and maintains a private practice in Manhattan. She is also certified in clinical hypnosis and fellowship trained in the management of chronic pain. Traci received a PhD from Columbia University and an MPH in community health education from New York University. She is the creator of a series of audio self-help programs on topics ranging from self-hypnosis for healthy weight and body image, changing habits, and enhancing self-esteem, to developing self-compassion and learning mindfulness meditation. Traci’s book, “The Everything Guide to Integrative Pain Management,” has won the Independent Book Publishers Association Benjamin Franklin Award in the health and fitness category. For more information, visit her website, DrTraciStein.com, or follow her on Twitter (@DrTraciStein) or Facebook (Facebook.com/DrTStein).

Our Community Council webinar in October 2015 was about Active and Upcoming EB Clinical Trials. EB experts and researchers joined us. Listen to the recording and see the presentation here.


Our July 2015 Community Council meeting was focused on Public Policy Advocacy. Two distinguished co-hosts shared their expertise:

–   Eleanor Dehoney, Vice President of Policy and Advocacy at Research!America and EB Research Partnership Board Member

–   Michele M. Oshman, Director, Federal Alliance Development, Corporate Affairs, Eli Lilly and Company.

Here is the presentation with some additional resources that were highlighted during the webinar. A recording of the webinar can be seen here.  Ellie Dehoney created this guide: Elevator Speech and Background, a helpful document about how to craft your story and request when meeting with a public official.


Our first Community Council webinar was held on Monday, April 13, 2015 at 7 p.m. EST/4 p.m. PST. Dr. Alfred Lane, Stanford University’s Dermatology Department Chair emeritus, provided an overview of the recent published literature about EB findings and studies. Here is the presentation from that meeting. 

If you would like to listen to a portion of the webinar, please click this link. This document, the 4.13 Community Council Time Marker, outlines the subjects and specific questions and where you can find them in the webinar recording.

For general questions about the Community Council, you can reach us at info@ebresearch.org.


The Community Council Program is sponsored by:

 

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Fibrocell

 

 

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McKesson