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PROQR SPINS OUT ALL DEB ACTIVITIES INTO NEWLY FORMED WINGS THERAPEUTICS CREATED BY EBRP

MARCH 26, 2019
ProQR Therapeutics announced the strategic spin out of all Dystrophic EB (DEB) activities into Wings Therapeutics, a new company formed and financed by EB Research Partnership. Wings Therapeutics will continue to conduct clinical trials of QR-313 in exon 73 and progress other RNA molecules designed for other DEB mutations. Read the full press release here.

NONPROFIT’S INNOVATIVE INVESTING HELPS CURE A CHILDHOOD DISEASE

NOVEMBER 27, 2018
Creator by WeWork featured EBRP in a piece highlighting our innovative venture philanthropy model that is changing the way nonprofits think about fundraising and expediting the path to treatments and cures for EB. Read the article here.

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EMA Grants PRIME Eligibility for KB103 to Treat DEB

MARCH 29, 2019
Krystal Biotech announced that the European Medicines Agency (EMA) has given KB103, Krystal's topical gene therapy candidate for treatment of DEB, PRIME (PRIority MEdicines) designation, which is awarded to promising treatments that target an unmet medical need. Through the PRIME program, the EMA offers support to expedite the path to drug evaluation. Read the full press release here.

ProQR spins out all DEB activities into newly formed Wings Therapeutics created by EBRP

ESPN’s Scott Van Pelt to Host 2nd Annual Change for Charley on March 9 in Chicago

MARCH 1, 2019
EB Research Partnership announced the 2nd annual Change for Charley gala will take place on Saturday, 3/9, from 7pm-1am at Artifact Events in Chicago, IL. Emceed by ESPN's Scott Van Pelt, the inspiring event features food and drinks, an exclusive auction, and live entertainment. Visit changeforcharley.org to purchase tickets and read the full press release here.

Luis Ortiz named ambassador for
EB Research Partnership

MARCH 1, 2019
EB Research Partnership presented heavyweight boxer Luis "King Kong" Ortiz was with an EB Ambassador Award on Rare Disease Day during the press conference in advance of his upcoming match on Saturday. The award recognizes Ortiz's leadership in joining us to accelerate treatments and cures for EB, not only for his daughter, Lismercedes, who lives with the disease, but the thousands worldwide like her. Read the full article here.

Phoenix Tissue Repair Doses First Patient in Phase 1/2 Clinical Trial of PTR-01 (BBP-589) for Treatment of Recessive Dystrophic EB (RDEB)

FEBRUARY 22, 2019
Phoenix Tissue Repair has dosed the first patient in their Phase 1/2 in-human clinical trial of PTR-01, a protein replacement therapy for recessive dystrophic EB. The trial will evaluate the safety, tolerability, and pharmacokinetics of PTR-01 in RDEB patients along with various secondary endpoints. Read the full press release here.

EB Research Partnership Announces the 2nd Annual Plunge for Elodie on March 2 in Wellesley

FEBRUARY 21, 2019
EB Research Partnership announced the 2nd annual Plunge for Elodie on Saturday, March 2nd at Morses Pond in Wellesley, MA at 8am. In its second year, Plunge for Elodie has expanded to include a satellite plunge at Edgewater Park Beach in Cleveland, OH at 2:30pm. Get involved at plungeforelodie.org and read the full press release here.

EBRP, EBRF and other Global EB Charities Collaborate to Announce $1 Million Award for EB Simplex

DECEMBER 21, 2018
We announced a $1M research award for a disease-modifying treatment or cure for EB Simplex (EBS) in collaboration with EB Research Foundation, EMBRF, and the John and Anne Oros Foundation. EBS is the most common subtype of EB, however there are currently few projects aimed at developing therapies for EBS patients. With our partners, we look forward to advancing research for this underserved community. Read the full press release here.

Fibrocell Receives $900,000 Investment from EBRP and EBMRF

DECEMBER 11, 2018
EB Research Partnership and EB Medical Research Foundation have invested $900,000 into Fibrocell's FCX-007 gene therapy for treatment of Recessive Dystrophic EB. Through EBRP's innovative Venture Philantrhopy model, the organizations received stock in exchange for the investment. Read the full press release here.

Constant Pharmaceuticals to Initiate Clinical Development of TXA127 for Epidermolysis Bullosa

NOVEMBER 27, 2018
Constant Pharmaceuticals will begin development of an oral formulation of TXA127 for treatment of RDEB. In animal and in vitro models, TXA127 has demonstrated anti-fibrotic effects and caused reduction in the fusion of digits. After the development stage, Constant aims to open a Phase 2 trial of TXA127 in Europe and the United States. EBRP is a proud funder of this research. Read the full press release here.

Nonprofit’s Innovative Investing Helps Cure a Childhood Disease

EB Research Partnership and EB Research Foundation Join Forces to Advance Breakthroughs in Epidermolysis Bullosa Research

AUGUST 27, 2018
EBRP and Australian-based EB Research Foundation, announced a global collaboration to accelerate our shared mission of advancing life-saving treatments for EB. EB Research Foundation will provide funding to EB Research Partnership to leverage our independent Scientific Advisory Board (SAB) as well as our innovative venture philanthropy model. Read the full press release here.

Researchers Reveal Cause of Aggressive Skin Cancer in Patients with Butterfly Syndrome

AUGUST 22, 2018
EBRP is proud to support the work of an international team of researchers led by Thomas Jefferson University and UCSF Medical Center whose breakthrough development revealed the cause of aggressive skin cancer in patients with EB. This work opens the door to a more effective treatment approach for patients. Read more here.

ProQR Receives up to $5 Million in Partnership with EBRP and EBMRF to Develop QR-313 for DEB

MAY 21, 2018
EB Research Partnership and EBMRF partnered to fund up to $5 million for ProQR's Phase 1/2 human clinical trial of QR-313, a potential therapy for Dystrophic Epidermolysis Bullosa (DEB). QR-313 addresses mutations in exon 73 of the Collagen VII gene through exon skipping, causing the production of functional protein. Read the press release here.

Stanford Study oN Serlopitant for iNDICATES POSITIVE RESULTS

MAY 21, 2018
Researchers from Stanford University presented the results of their exploratory study of Serlopitant for treatment of pruritus in EB patients funded by EBRP and EBMRF. Results indicate that Serlopitant was well-tolerated and more effective in reducing itch compared to placebo, supporting the potential of this drug as a treatment for EB patients. Read the press release here.

Parents Fight to Find Cure for Toddler Suffering From Rare Skin Disease: She's Covered in 'Wounds'

MARCH 15, 2018
People Health covered this story on Elodie Kubik, a two-year old with RDEB, and her family's exeperience with EB. Friends of the Kubiks started the Plunge for Elodie, a polar plunge, to raise awareness for EB and funds for EB Research Partnership. Actress Jessica Biel joined in on the action by plunging into her own swimming pool and posting a video on social media. Read more about the Kubiks and the Plunge for Elodie here.

Jessica Biel Just Introduced Us to the Next Ice Bucket Challenge

MARCH 4, 2018
Actress Jessica Biel took the Plunge For Elodie into her swimming pool and posted the video on social media to show her support for Elodie, a baby girl with RDEB. The Plunge for Elodie was started by lifelong friends of EBRP Board Member and Elodie's mother, Emily Kubik. Read Brit + Co's article and watch Biel's plunge here.

In Hingham, friends plan to 'plunge for elodie'

FEBRUARY 23, 2018
The Boston Globe covered this heartwarming story of Board Member Emily Kubik and her lifelong friends who came together to find a cure for Kubik's daughter Elodie, a 19-month-old with RDEB. The friends planned to 'Plunge for Elodie' and have raised over $108,000 and counting. They will take a polar plunge into the chilly waters of Hingham Bathing Beach in Hingham, MA on Saturday, March 3rd.

High-Efficiency RNA-Based Reprogramming of Human Primary Fibroblasts

FEBRUARY 21, 2018
EB iPS Cell Consortium scientists led by Dr. Dennis Roop have discovered a highly efficient RNA-based method to reprogram patients' affected cells into iPS (induced pluripotent stem) cells. This technology is potentially curative and this breakthrough brings us closer to introducing iPSCs in clinical trials. This research has been accepted and validated by all EB iPS Cell Consortium members, who will use this method in their studies.

Inaugural Change for Charley

NOVEMBER 22, 2017
The Kauf Family of Chicago held their first annual Change for Charley event on November 11th which raised over $320,000 for EB Research Partnership! Brooke and Michael Kauf, featured in this Chicago Magazine article, held the event in honor of their 5-year-old daughter Charley, who lives with EB. Read the article to learn more and see some fantastic photos from this successful night for EB research.

Krystal Biotech Receives Equity-Based Award from EBRP and EBMRF

NOVEMBER 3, 2017
EB Research Partnership and EB Medical Research Foundation granted an equity-based award totaling $770,000 to Krystal Biotech for research on treatments and cures for EB, specifically their lead-candidate KB103, a potential gene therapy for DEB. Read the press release here.

ABEONA RECEIVES FDA BREAKTHROUGH therapy designation for eb-101

AUGUST 29, 2017
Abeona Therapeutics' EB-101 gene therapy program, which recently was recommended to enter phase 3 of clinical trial, has received Breakthrough Therapy designation by the FDA. EBRP is a proud partner to Abeona and the Stanford research team. Read more here.

Students raise funds for teen with rare skin disease

JUNE 28, 2017
Students at Gaynor McCown Expeditionary Learning School in Staten Island, NY raised money for EBRP in honor of John Hudson Dilgen. Read more here.

Butterfly babies

MAY 30, 2017
The Washington Post featured our friend Ella in a wonderful article detailing the hardships and the beauty in living with EB.

Abeona Receives Orphan Drug Designation in the EU for EB-101

MAY 25, 2017
The EB-101 program, a potential gene therapy for RDEB, has been granted Orphan Drug Designation in the European Union. Read this press release for more information.

Watch Eddie Vedder Honor Tony Stewart at NASCAR Gala

DECEMBER 2, 2016
Eddie Vedder made a surprise appearance at the NASCAR Sprint Series Awards Banquet in Las Vegas to pay tribute to Tony Stewart in honor of his retirement. NASCAR donated $1.8 million to EBRP on behalf of Stewart. Watch the video and read more here!

Pearl Jam’s Eddie Vedder surprises Tony Stewart at NASCAR Awards

DECEMBER 3, 2016
Eddie Vedder surprised Tony Stewart at the NASCAR awards, where both were thrilled to learn about the $1.8 million donation NASCAR made to EBRP in Stewart's name. Read more in this article.

Clinical Trial Press Release: Stanford Medicine Gene Therapy

NOVEMBER 1, 2016
The Stanford researchers reported the results of four adult patients in the November 1st Journal of the American Medical Association. Read the press release for highlights on this groundbreaking research!

David Deshe and Alex Silver discuss venture philanthropy during 2016 Nexus Global Youth Summit

SEPTEMBER 9, 2016
Watch this video of a discussion on Venture Philanthropy featuring David Deshe, a major EBRP supporter, and Alex Silver, Chairman of EBRP's Board, facilitated by Heron Foundation’s Toni Johnson at the 2016 Nexus Global Youth Summit on July 21, 2016 at The New School in NYC.

Abeona, EBRP, and EBMRF to Collaborate on EB Treatments

AUGUST 9, 2016
Abeona Therapeutics, EB Research Partnership, and EB Medical Research Foundation announced their collaboration on gene therapy treatments for EB.
Read the press release for more information!

Leading Genetic Researchers Partner to Find Treatments, Cures Faster for EB

AUGUST 1, 2016
EBRP brought together scientists from Stanford, Columbia and Colorado Universities to form the EB iPS Cell Consortium. The consortium will work together to reach their common goal of curing EB. Read the press release for more information!

Help for ‘butterfly children’ in sight, thanks to rockers who care

JANUARY 4, 2016
Read this article from the Today Show about Eddie and Jill Vedder's commitment to EBRP and finding a cure for kids like Mikey and Jackson.

Miami’s Deshe family gives $3M to research for rare skin disorder

AUGUST 19, 2015
Read this article from the Miami Herald about the Deshe Family's tremendous $3 million gift to EB Research Partnership. We are extremely appreciative of the Deshes' continued support to our cause!

Father’s Day Message to Butterfly Child: I Would Give Anything to Take the Pain Away

JUNE 17, 2015
As the father of a child with Epidermolysis Bullosa, a rare genetic condition that makes the skin as delicate as a butterfly’s wings, Father’s Day is a reminder of Alex Silver’s journey to find a cure for his son, a butterfly child. In this letter, Silver reflects on the pain his son, Read the full story here.

Facebook is a friend to those suffering rare maladies

MAY 25, 2015
EB Research Partnership’s Jamie Silver and Michelle Hall were interviewed for this article in the San Francisco Chronicle.

EB Research Partnership Forms Scientific Advisory Board

MAY 18, 2015
EB Research Partnership formed its inaugural Scientific Advisory Board in May of 2015. The board, made up of esteemed medical professionals, will apply its collective scientific expertise to advise EBRP on which EB research projects we should fund. Read more here.

Woman with Rare Skin Disease to Run Shamrock Shuffle

MARCH 26, 2015
Rachael Wrobel, a young woman with EB, ran the Shamrock Shuffle in Chicago to raise EB awareness and fundraise for EB Research Partnership. Visit our Endurance Events page to learn more about joining our team for events like this one!
Click here to read more about Rachael's story.

OC Students Sell Lemonade to Raise Money, Awareness In Honor of Peer

JANUARY 19, 2015
Orange County elementary school students raised money and awareness for EB ion honor of Mikey Fullmer. Read more of this heartwarming story here.

Your Donations Can Buy Time. Your Generosity Can Give Life.

NOVEMBER 6, 2014
Read this speech given by Alexander Silver, Board Chairman and Co-Founder of EB Research Partnership, at our annual ACTion for Jackson event.

Hitting the right notes

OCTOBER 20, 2014
Eddie Vedder honors Dr. Jakub Tolar, a doctor and leading EB researcher at University of Minnesota, at the Pearl Jam concert on October 19, 2014 at Xcel Energy Center in St. Paul, MN. Read the full article and watch the video here.

Eddie Vedder Supports Research for Curing Rare Skin Disease EB

Eddie Vedder encourages you to "Cause The Wave" to heal EB in this video campaign for EB Research Partnership. Click here to read the article and watch the video featured in Rolling Stone for more information.

A Venture to Cure an Orphan Disease

OCTOBER 2, 2014
Read this article featured in The Wall Street Journal about the formation of EB Research Partnership spotlighting two of our co-founders, Alexander and Jamie Silver.

Jackson Gabriel Silver Foundation and Heal EB Announce Merger

OCTOBER 1, 2014
The Jackson Gabriel Silver Foundation and Heal EB merged to form the collective EB Research Partnership on October 1, 2014. Read more about the formation of EBRP in our merger announcement.

The Doctors House Call: the boy with the butterfly skin

Watch this video featured on The Doctors TV about Dr. Jim Sears' visit with our friend John Hudson Dilgen, who has severe EB.