PROQR RECEIVES UP TO $5 MILLION IN PARTNERSHIP WITH EBRP AND EBMRF TO DEVELOP QR-313 FOR DEB
MAY 21, 2018
EBRP 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 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.
PARENTS FIGHT TO FIND CURE FOR TODDLER SUFFERING FROM RARE SKIN DISEASE: SHE'S COVERED IN 'WOUNDS'
MARCH 15, 2018
People Health featured Elodie Kubik, a two-year old with RDEB and the Plunge for Elodie, a polar plunge to raise awareness for EB and funds for EBRP. Actress Jessica Biel joined in on the action by plunging into her own swimming pool and posting a video on social media. Read more and watch the video 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.
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!
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!
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.
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.
Watch this video featured on The Doctors TV about Dr. Jim Sears' visit with our friend John Hudson Dilgen, who has severe EB.