LETTER FROM MIChael hund
ceo of eb research partnership
At EBRP, we have one bold audacious goal: heal and cure EB by 2030 and in the process pioneer a model that can benefit the more than 400 million people affected by a rare disease. As we reflect on 2022, we are proud of the progress that has been made towards achieving that goal and our team is more inspired than ever to continue advancing life-saving treatments and cures for EB families across the globe.
With your generous support this year, EBRP achieved a record year for research funding: we funded 19 innovative research projects in 6 countries, accelerating cutting-edge science with potential to heal all forms of EB, totaling over $6.6 million in grant awards.
In 2022, we funded projects in the United States, France, Germany, India, Australia, and the UK for every EB subtype. They include a diverse portfolio of approaches including curative therapies, gene therapies, spray-on skin, ocular treatments, stem cell therapies, exon skipping, topical wound healing, squamous cell carcinoma treatments, drug repurposing, augmented intelligence cancer detection and prevention, immune therapies, and antibody therapies. We funded a mix of academic medical centers and universities, startups, and biotech and pharma companies. We prioritized funding for projects that are either already in clinical trials or have a strong strategy to be in the hands of patients in the next 1-3 years and will lead to significantly improving the quality of lives of those living with EB or aim to be curative.
Over the last 12 years, we have raised over $50 million to fund more than 120 EB research projects, directly transforming the clinical landscape for EB. Since our founding, the number of clinical trials in EB has increased more than 20 times, from just 2 clinical trials in 2011 to over 40 today.
With your generous support this year, EBRP achieved a record year for research funding: we funded 19 innovative research projects in 6 countries, accelerating cutting-edge science with potential to heal all forms of EB, totaling over $6.6 million in grant awards.
In 2022, we funded projects in the United States, France, Germany, India, Australia, and the UK for every EB subtype. They include a diverse portfolio of approaches including curative therapies, gene therapies, spray-on skin, ocular treatments, stem cell therapies, exon skipping, topical wound healing, squamous cell carcinoma treatments, drug repurposing, augmented intelligence cancer detection and prevention, immune therapies, and antibody therapies. We funded a mix of academic medical centers and universities, startups, and biotech and pharma companies. We prioritized funding for projects that are either already in clinical trials or have a strong strategy to be in the hands of patients in the next 1-3 years and will lead to significantly improving the quality of lives of those living with EB or aim to be curative.
Over the last 12 years, we have raised over $50 million to fund more than 120 EB research projects, directly transforming the clinical landscape for EB. Since our founding, the number of clinical trials in EB has increased more than 20 times, from just 2 clinical trials in 2011 to over 40 today.
|
|
|
2022 marked another milestone: the first ever approved treatment in the world for EB with the European Commission approving Amryt’s Filsuvez® for the treatment of Dystrophic and Junctional EB. And now, for the first time, 4 clinical trials are in the final phase before potential approval by the FDA, giving hope to EB families that help is on the near horizon. 3 of these trials, from Abeona Therapeutics, Castle Creek Biosciences, and Krystal Biotech, are gene therapies - treatments with the ability to impact EB patients’ skin to make the missing protein that causes their disease, aiming to significantly improve quality of life and heal wounds. EBRP was an early investor in all three of these gene therapies under our leading Venture Philanthropy model, advancing these projects into the clinic while generating a return on investment to fund more research until a cure is found. Further, our model and the research we fund can advance cures beyond EB for the 7,000 rare diseases that affect 400 million people around the world.
In 2022, EBRP presented year 3 of our global digital event: Venture Into Cures, which in total has raised over $6 million to accelerate a cure for EB and share our mission and stories of the EB community to millions of people, making it the largest fundraiser and awareness event not only for EB but rare disease at large. This year courageous EB families and the medical community were joined by Billie Eilish, Will Ferrell, Tom Holland, Joe Jonas, Kermit the Frog, John Legend, Joy Oladokun, Red Hot Chili Peppers, Chris Pratt, Keanu Reeves, Olivia Rodrigo, David Spade, Lauren Spencer-Smith, The Vedder Family, Emma Watson, Venus Willams, and many more. If you missed it, you can watch this year’s event here: 2022 Venture into Cures.
2022 also saw EBRP’s model highlighted for our leadership by Harvard Business School, a case study being taught on our leadership in venture philanthropy and technology by Yale University, winning the Horizon Prize powered by MIT Solve, and sharing our mission at leading conferences such at the Social Innovation Summit , the Concordia Summit, & AWS re:Invent.
If you have not yet supported this year, please consider joining the community that has made critical EB research possible by making a donation before year-end, please click here.
We are honored to have you on the team that WILL heal EB. Thank you for joining us as we continue on our venture into cures, for EB and beyond. Wishing you and your family a wonderful holiday season.
With gratitude,
In 2022, EBRP presented year 3 of our global digital event: Venture Into Cures, which in total has raised over $6 million to accelerate a cure for EB and share our mission and stories of the EB community to millions of people, making it the largest fundraiser and awareness event not only for EB but rare disease at large. This year courageous EB families and the medical community were joined by Billie Eilish, Will Ferrell, Tom Holland, Joe Jonas, Kermit the Frog, John Legend, Joy Oladokun, Red Hot Chili Peppers, Chris Pratt, Keanu Reeves, Olivia Rodrigo, David Spade, Lauren Spencer-Smith, The Vedder Family, Emma Watson, Venus Willams, and many more. If you missed it, you can watch this year’s event here: 2022 Venture into Cures.
2022 also saw EBRP’s model highlighted for our leadership by Harvard Business School, a case study being taught on our leadership in venture philanthropy and technology by Yale University, winning the Horizon Prize powered by MIT Solve, and sharing our mission at leading conferences such at the Social Innovation Summit , the Concordia Summit, & AWS re:Invent.
If you have not yet supported this year, please consider joining the community that has made critical EB research possible by making a donation before year-end, please click here.
We are honored to have you on the team that WILL heal EB. Thank you for joining us as we continue on our venture into cures, for EB and beyond. Wishing you and your family a wonderful holiday season.
With gratitude,
Michael Hund
Chief Executive Officer
EB Research Partnership
Chief Executive Officer
EB Research Partnership
CEO of EB Research Partnership Michael Hund Teaches a Masterclass on Venture Philanthropy in 3 Minutes
WATCH HERE:
We thrive on opportunities to achieve the seemingly impossible. For those living with Epidermolysis Bullosa, or EB, living a pain free life, being able to eat, sleep, and even walk without suffering, is their elusive dream.
But it's not impossible. EB is an often fatal genetic skin disorder that affects children from birth. But curing EB is not an if – only a when. And at EB Research Partnership, our goal is to cure EB. EB Research Partnership is dedicated to finding a cure, and finding it quickly.
But it's not impossible. EB is an often fatal genetic skin disorder that affects children from birth. But curing EB is not an if – only a when. And at EB Research Partnership, our goal is to cure EB. EB Research Partnership is dedicated to finding a cure, and finding it quickly.
