News Coverage


Dilgen featured on "The Doctors"

"The Boy with the Butterfly Skin" is featured on CBS' "The Doctors." John Hudson Dilgen shares what life with EB is like with Dr. Jim Sears (See More).

University of Minnesota’s Blog Highlights JGSF’s commitment to EB Research
JGSF partners with the EBMRF on a $450,000 Matching Campaign which was successfully completed in December 2012 to support the work of Dr. Jakub Tolar. Please click here to read it (Read More).
EB Resource’s Blog Features a Q & A with JGSF Co-Founder Jamie Silver
Please click here to read about Jamie’s experience raising a child with EB and co-founding the Jackson Gabriel Silver Foundation (Part 1 and Part 2).
Medium Writer Offers a Personal Perspective on the Establishment of JGSF
Kate Lee shares her thoughts on watching the Silver family adjust to life with EB and the establish JGSF. Please click here to read it (Read More).




2012 NYC Half-Marathon
15 runners on Team JGSF laced up their sneakers for the NYC Half Marathon on March 18, 2012. 5 of these runners are mothers of sons suffering from EB. The “EB Moms” ran the last mile of the race wearing butterfly wings in honor of their sons whose skin is as fragile as butterflies’ wings. Team JGSF raised over $54,000 for disease research.
   
Jewish Standard Writes About David Beiss’ Success in Raising Funds for EB Research
David Beiss, a young man with EB Simplex, organized a team of 44 students to run in the Jerusalem Marathon on March 16. 2012. “Team Butterfly” raised over $40,000 for EB research for the JGSF. You can read more about David and Team Butterfly in the March issue of the Jewish Standard . David is a true EB hero! .
2011 NIH Pediatric Roundtable Written Materials
In December 2011, Alex participated at the NIH Roundtable on Pediatric Dermatology. To read his materials which summarize discussions in the community about living with EB and the needs and desires of the EB community, please click here.
Bloomberg Magazine includes a profile of the JGSF
An article about finding and funding cures for rare diseases appeared in the October 2011 issue of Bloomberg Magazine and featured a profile of the Foundation. Please click here to read it.
Horace Mann Article highlights the JGSF
An article about the JGSF and its efforts to advance EB research appeared in the Winter 2012 issue of the Horace Mann Alumni Magazine. Please click here to read it.
Lifestyles magazine profiles the JGSF
In its pre-spring 2011 edition, Lifestyles magazine, which is a publication dedicated to highlighting philanthropy, profiled the Jackson Gabriel Silver Foundation. For over 35 years, Lifestyles has encouraged the support of global foundations and charities. A copy of the article can be read by clicking here.
 
 
FDA highlights JGSF as Part of the Fourth Annual Rare Disease Day
As part of its global campaign to raise awareness for rare diseases and the Americans afflicted by them, the FDA has highlighted EB and the Jackson Gabriel Silver Foundation.

We are honored that the FDA is helping JGSF raise EB awareness and the need for resources to fund cures for all rare diseases.

With continued support, we can make a cure for EB a reality. To read the official FDA release that highlights EB and JGSF, please click here. A link to the article on the FDA's website can be found here.
 
Senate Hearing Highlighting Rare Pediatric Diseases and EB:
In July 2010, Alex testified at a rare pediatric disease hearing in front of the U.S. Senate in Washington DC on behalf of children with EB. His testimony addressed the need for additional resources to cure EB and a refined approval process to ensure these treatments are available to today’s children.
A copy of his full written testimony can be downloaded here and congressional video coverage of the hearing can be viewed (skip to minute 103) below. Alex has prepared additional written materials for Senators in response to their questions post hearing, which can be downloaded here.

We are thrilled that ABC news covered this event. A short video can be viewed below and abcnews.com written coverage can be found here.
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Epidermolysis Bullosa (“EB”) is a group of devastating, painful, disfiguring and currently incurable blistering disorders that affect children from birth.
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