​EBRP is guided by two dedicated boards, an Executive Board of Directors that steers our mission and funding decisions, and a Scientific Advisory Board of leading specialists who ensure our research investments drive real progress toward a cure for EB.

meet the executive board of directors

meet the scientific advisory board

executive board of directors

Our Executive Board of Directors provides strategic leadership and oversight, championing EBRP's mission to accelerate research and bring hope to the EB community.

jill vedder
CO-FOUNDER AND CHAIRWOMAN

ABOUT JILL

​Jill Vedder is a founder and Chairwoman of EBRP. In her role as Chairwoman, she oversees fundraising and serves as a senior adviser on strategic and programmatic direction. Her efforts are demonstrably accelerating progress towards treatment breakthroughs and ultimately a cure.
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Jill is a serial philanthropist who is also active with the Vitalogy Foundation. ​

eddie vedder
co-founder

ABOUT EDDIE

Activist and front man of Pearl Jam, Eddie Vedder is a founder of EBRP and has taken up causes from health care to antitrust. Eddie’s connection to everyone living with Epidermolysis Bullosa inspires his work to improve the lives of individuals with EB and to aggressively fund research. Born in Evanston, Illinois, Vedder grew up mostly in Southern California. In his twenties, he played in several San Diego bands before his recruitment into the band that would become Pearl Jam.

JENNifer Kauf
SECRETARY

ABOUT JENNIFER

Jennifer Kauf is the Global Head of Marketing & Creative at FIRST, a global brand experience agency. She brings her background in brand strategy, fundraising and events to EBRP, and has served as a Board Member since 2016. Jen has over 25 years of experience in creative direction, team leadership, and development, and is a fierce advocate for innovation. In 2024 she received the Industry Leader Award from Smart Women in Meetings. Jen is Aunt to Charley, who has Dystrophic EB. Jen and her family have led the “Change for Charley” Fundraising event since 2017. To date they have raised over $1.5 million for EBRP sponsored research initiatives.

EMILY KUBIK
TREASURER

ABOUT EMILY

Emily Kubik is the Chief Operating Officer at Cypress Ridge Capital, a private equity firm, where she manages non investment related activities of the Firm. She has a strong background in finance, with previous roles at Great Point Partners, CI Capital Partners, Endeavour Capital, and Wells Fargo. A Stanford University graduate, Emily is also the founder of Plunge for Elodie, a fundraising initiative started in 2018 that has raised over $2.5 million to date. She is a proud mother to Elodie.

Nathan Burmeister
BOARD MEMBER

ABOUT NATHAN

Nathan is the Chair of EBRP Australia and is a founder, executive and director of an engineering consultancy based in Melbourne Australia.
Nathan’s career has included senior leadership roles for ASX listed companies including a role as Transport Manager where he oversaw an engineering division of 80 people. Nathan has also led national engineering teams.
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Nathan is a chartered engineer and a member of the Australian Institute of Company Directors. Nathan’s skills include problem solving, project management, business administration, financial management, people management and advanced analytical skills.

​Nathan is the father of Jacob Burmeister, a child with Severe Recessive Dystrophic Epidermolysis Bullosa.

Daniel DESHE
BOARD MEMBER

ABOUT DANIEL

Daniel Deshe is a dedicated advocate for finding a cure for Epidermolysis Bullosa (EB), a mission that is deeply personal to him. Born with EB Simplex, along with two of his siblings and father, Daniel has taken an active role in supporting research and advancing treatments to make a cure a reality.

​Professionally, Daniel is a partner at Deshe Capital, bringing a wealth of experience in strategic planning and financial management. He holds both a BA and MS in accounting from the University of Colorado, Boulder, and previously served as a partner in a sports marketing firm.

faye dilgen
BOARD MEMBER

about faye

Faye has served on the Board of the EB Research Partnership for over 10 years. During that time she has fundraised via many platforms to help find a cure for EB including numerous NYC, Virginia Wine Country and Disney Marathons, Plunges for Elodie, Guest Bartending gigs, and more.

Faye holds a BS in Biology, BS in Health Science, MS and DPT in Physical Therapy and is ABD from the PhD Program in Pathokinesiology at New York University.  Faye is an orthopedic manual therapist and Program Manager at NYU Langone Health’s Harkness Center for Dance Injuries, where she has treated dancers from numerous dance companies, schools and Broadway shows for over 30 years. Faye currently serves on EBRP’s Research Committee and is a mom to three children, including John Hudson, who lived with severe RDEB and passed away in 2026. He remains her inspiration for serving on the Board.​

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Dr. Greg Licholai
board member

ABOUT greg

Dr. Greg Licholai is the Chief Medical & Innovation Officer at ICON, a global leader in clinical research. He is on the faculty at Yale School of Management, co-directs the Center for Digital Health, and teaches healthcare innovation at Harvard Business School. Previously, Dr. Licholai held executive roles at Moderna Therapeutics, Castle Creek Pharmaceuticals, and McKinsey & Co., and co-founded Immunome Therapeutics. He holds degrees from Harvard, Yale, Columbia, and Boston College and has trained in Neurological Surgery. Dr. Licholai also writes on healthcare innovation for Forbes and is the author of Introduction to Medical Software.

Mathew Rosengart
board member

ABOUT mathew

Mathew Rosengart is widely recognized as one of the nation’s preeminent counselors and litigators.  A former federal prosecutor now a partner at a global law firm, Mathew has been acclaimed by long-time client Sean Penn as a “tough as nails streetfighter with a big brain and bigger principles,” by Forbes as a “revered” litigator who “brings the passion and legal expertise to private practice that made him notable as a federal prosecutor,” by The Guardian as a “high powered lawyer,” and by Variety as “Hollywood’s King of Litigators.”  Former Supreme Court Justice David H. Souter, for whom Mathew clerked after law school on the New Hampshire Supreme Court, has praised Mathew’s “intelligence,” “instinct,” and “personal integrity,” and Mathew’s former Justice Department supervisor and now United States District Judge Robert J. Conrad called Mathew “one of the sharpest lawyers I’ve ever met at the Department of Justice,” whose “judgment is impeccable.”
​Among the numerous accolades earned for his legal work, Mathew, who served two terms as a Governor of the Beverly Hills Bar Association, has received Variety’s Power of Law award for legal excellence and philanthropy, the Beverly Hills Bar Association’s Excellence in Advocacy Award, and the Law Society of Trinity College of Dublin’s Praeses Elit Award, the Society’s highest honor, previously bestowed upon F.W. de Clerk and Sir Bob Geldof.  Mathew was also named “Attorney of the Year” by Above the Law, a “California Lawyer of the Year” by the Daily Journal, a Litigation “Trailblazer” by The National Law Journal, a “Litigation Star” and “Entertainment Litigator of the Year” by Benchmark Litigation (the definitive guide to litigators in the U.S., which honors “the country’s most distinguished litigators and their firms for their exemplary work”), a Top Music Lawyer by Billboard, a Media & Entertainment MVP by Law360, and an LA500 Visionary Leader by the LA Business Journal, which also named Mathew a “Leader of Influence and Top Litigator & Trial Attorney,” which honors “masters of their craft” who “go to the proverbial mat for their clients.”  Mathew has also been described by NPR as a lawyer with “a lot of star power” and by Los Angeles Magazine as a “winner” with “a long history of getting results for his big name clients.”
​Additionally, Forbes named Mathew to its inaugural list of the Top 200 lawyers in the country, which recognizes the finest lawyers in the profession, the leaders in their fields, and the attorneys most respected by peers and clients, making them “the best in the business,” and Lawdragon recognized Mathew as one of the 500 Leading Litigators in America.  Mathew has also been acknowledged in Best Lawyers in America and is regularly recognized as one of the leading lawyers in the entertainment industry in both Variety’s Legal Impact Report and The Hollywood Reporter’s prestigious Power Lawyer Report.

Michael Sacks
board member

ABOUT michael

Michael J. Sacks is Board Chairman and CEO of GCM Grosvenor (NASDAQ: GCMG), a global alternative asset management firm headquartered in Chicago, with offices in New York, Los Angeles, Toronto, London, Frankfurt, Tokyo, Hong Kong, and Seoul.
From 2011 to 2019, Michael served on the Chicago Mayor’s Economic Council and was Vice-Chairman of World Business Chicago, the city’s delegate economic development organization. He currently serves on the Board of Directors of the Barack Obama Foundation and the Art Institute of Chicago.
Most recently, Michael served as President of Development Now for Chicago, the official Host Committee for the 2024 Democratic National Convention, which was held this past August in Chicago. Michael has also served on the Northwestern University Board of Trustees for 14 years. He and his wife, Cari, created the Sacks Family Scholarship Fund, which provides “no loan” scholarships to Chicago Public Schools students to attend Northwestern University.
A native of Chicago, Michael graduated from Tulane University with a B.S. in Economics and holds a general course certificate from the London School of Economics. He also holds an M.B.A. from the Kellogg Graduate School of Management at Northwestern University and a J.D. from Northwestern University Law School.

Marc seidner
board member

ABOUT marc

Mr. Seidner is the PIMCO CIO Non-traditional Strategies and a managing director in the Newport Beach office. He is also a generalist portfolio manager and a member of the Investment Committee. He rejoined PIMCO in November 2014 after serving as head of fixed income at GMO LLC, and previously he was a PIMCO managing director until January 2014. Prior to originally joining PIMCO in 2009, he was a managing director and domestic fixed income portfolio manager at Harvard Management Company, director of active core strategies at Standish Mellon Asset Management and a senior portfolio manager at Fidelity Management and Research.
​He has 37 years of investment experience and holds an undergraduate degree in economics from Boston College. Marc is a member of the Treasury Market Practices Group of the Federal Reserve Bank of New York and the Financial Sector Advisory Committee of the Federal Reserve Bank of Dallas. In addition to his professional responsibilities, Marc is a Trustee of Boston College where he serves on the Executive, Academic Affairs and Investment committees.  He is also a Board member of the Greater Western Sydney GIANTs football club.

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​IN HONOR AND MEMORY OF ARI DESHe
Vice Chairman

Ari Deshe served as Vice Chairman of EB Research Partnership and was a founding force behind our mission to cure EB. Born with EB Simplex, as were three of his children, Ari brought deep personal commitment, wisdom, and generosity to this work.
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Together with his wife, Ann, and their family, Ari helped inspire a movement of giving, advocacy, and hope for the EB community. His legacy continues to guide EBRP’s work toward treatments and cures.

“We would love to see this disease gone, and we want to be a part of helping eradicate it — forever.” - Ari Deshe

ARI'S obituary

Scientific Advisory Board

The SAB brings together leading specialists in genetics, hematology, protein therapy, and dermatology. They provide expert guidance to grant applicants and help shape a research environment built on collaboration, all with the shared goal of finding a cure for EB.

Anne Lucky, M.D.
chairwoman

ABOUT anne

As a pediatric dermatologist, Dr. Lucky has a special interest in epidermolysis bullosa (EB), and cares for patients with other genetic disorders and those with difficult acne. Before becoming a pediatric dermatologist, SHE practiced in general pediatrics, genetics and pediatric endocrinology. She was drawn to caring for children with EB because they are underserved, and many of their needs are complex.

A founder of the Cincinnati Children’s interdisciplinary Epidermolysis Bullosa Center, Dr. Lucky is now Professor Emeritus. The EB team offers comprehensive care for all aspects of EB, working with patients and their families to give them the best possible diagnoses and treatments.Dr. Lucky believes each patient and family deserves  full attention, and that it is vital to listen to patients and know them as people, not just to understand their medical issues.

Dr. Lucky has been honored to receive several awards for her clinical practice and service over the years. These recognitions have come from local and national societies such as the Cincinnati Children’s Hospital Alumni Association, The American Academy of Pediatrics, the Society for Pediatric Dermatology and the Dermatology Foundation. She remains dedicated to the pursuit of better treatments and ultimately a cure for EB.

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Elena Pope, MD, M.Sc., FRCPC
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ABOUT elena

Dr. Elena Pope is a professor at University of Toronto and Head of Pediatric Dermatology at the Hospital for Sick Children, Toronto, Canada. She has over 25 years of special expertise in paediatric skin disorders, and is involved in all aspects of clinical, education and research pertaining to the specialty. Dr. Pope’s academic interests are in rare, orphan diseases that require team collaboration and innovative clinical and research approaches. Dr. Pope created/co-created and has led specialized clinics in rare vascular tumors, epidermolysis bullosa, genodermatoses, morphea and cutaneous lymphoma. She is involved in investigator initiated and collaborative research in areas of interest.

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​Greg Barsh, M.D., Ph.D.

ABOUT greg

Dr. Greg Barsh is a Professor of Genetics at the Stanford University School of Medicine. Dr. Barsh earned his MD and PhD from the University of Washington in Seattle and trained in medical genetics at the University of California, San Francisco, before becoming a professor and HHMI investigator at Stanford University. His background in helping families that have inherited conditions helps motivate his efforts to discover the basic rules of biology.

Color variation is one of the most readily apparent differences among closely related animals, and has been studied extensively as a model for Mendelian genetics over the last 100 years. Dr. Barsh's laboratory is interested in the mechanisms that give rise to eye, hair, and skin coloration, both as a tool for studying gene action and interaction, and because many signaling pathways used by the pigmentary system play important roles in human development and disease.

Dr. Barsh previously worked at HudsonAlpha, where he had the opportunity to be part of an effort to bring genomics to medicine. His basic research helps to understand how variation in DNA sequence leads to differences in appearance, behavior, and disease.

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Amy Paller, M.D.
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ABOUT amy

Dr. Amy Paller is a distinguished researcher and clinician specializing in pediatric dermatology. She serves as the Walter J. Hamlin Professor of Dermatology and Pediatrics and Chair of the Department of Dermatology at Northwestern University Feinberg School of Medicine. Additionally, she directs the NIH-funded Skin Biology and Diseases Resource-Based Center and practices at Lurie Children’s Hospital of Chicago, focusing on genetic and inflammatory skin disorders in children.
Her research has touched many areas of biology, including related to epidermolysis bullosa. Her laboratory is seeking new ways to manage pain and itch in EB, with both clinical studies and investigations in mouse models of EB. She has recently developed an app that provides probability of skin cancer in dystrophic EB using artificial intelligence and is working collaboratively to find new ways to use gene therapy to cure EB. Her laboratory also focuses on understanding the lipid and protein biology of the skin barrier. Dr. Paller has led more than 130 clinical trials related to pediatric genetic and inflammatory skin disorders, contributing significantly to advancing new treatments, understanding skin diseases, and capturing the outcomes reported by patients and parents that critically impact quality of life.

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Andrew South, Ph.D.
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ABOUT andrew

Dr. Andrew South is the Oros Family Professor in Rare Skin Diseases in the Department of Dermatology at the University of Wisconsin-Madison. His lab has studied epidermolysis bullosa since 1999 when he began his post-doctoral studies with Professor John McGrath in London. Dr. South’s laboratory focuses on mechanisms of squamous cell carcinoma (SCC) initiation and progression in EB patients with a view to developing preventative or curative therapies. He studies EB disease mechanisms that lead to the development of cancer and has worked with a number of companies developing therapies for patients with EB such as Krystal Biotech’s Vyjuvek.

Christopher Sloey
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ABOUT chris

Chris Sloey is a Senior Principal Scientist at Amgen Inc. working in the department of Drug Product Technologies. He specializes in the development of protein therapeutics. He has been published multiple times and has several patents related to pharmaceutical formulations. He has a degree in Biochemistry from the University of California Los Angeles.

Alain Hovnanian, M.D., Ph.D.
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ABOUT alain

Dr. Hovnanian M.D, Ph.D, obtained his medical degree at University of Paris and trained in Dermatology and in Genetics in Paris. From 1993-2000, he did his post-doctoral fellowship at the Wellcome Trust Centre for Human Genetics at the University of Oxford, UK where he acquired experience in positional cloning of disease genes. He identified in particular the genes for recessive dystrophic epidermolysis bullosa, Darier disease and Netherton syndrome. He is now Professor of Genetics at the University of Paris and Director of an INSERM research laboratory on genetic skin diseases at the Imagine Institute for genetic diseases. His research interests include epidermolysis bullosa, Netherton syndrome and palmoplantar keratoderma with a specific focus on Pachyonychia congenita (PC) and Olmsted syndrome (OS). In 2021, he was awarded the “Eurordis Black Pearl Award” for rare diseases. He is a member of the scientific advisory board and Genetics team of Pachyonychia Project. He recently identified a new gene for Olmsted syndrome, described EGFR hyperactivation in PC and showed that the oral EGFR inhibitor Erlotinib was an effective treatment for OS and PC patients.

Suephy Chen, M.D., Ms

ABOUT Suephy

Suephy Chen, MD, MS, began practicing at Emory Healthcare in 2000 and has been board certified in dermatology since 1997. In addition to melanoma, Dr. Chen has clinical interests in pruritus, psoriasis, and atopic dermatitis.

Dr. Chen formerly served as a member of the Cancer Prevention and Control Research Program at Winship Cancer Institute of Emory University. She is also a member of the American Academy of Dermatology, the Society for Investigative Dermatology, and the Women's Dermatology Society. In addition, she is a founding member of the Pigmented Lesion Group of the Melanoma Prevention Working Group. 

Dr. Chen earned her Doctor of Medicine from Johns Hopkins University School of Medicine. She completed her internship at the Beth Israel Hospital, a Harvard University teaching hospital, before continuing on to a dermatology residency at Emory University Hospital. She obtained her Master of Science in Health Services Research at Stanford University and completed her fellowship at Stanford Hospital.

Dr. Chen is interested in quantifying the burden of skin disease, particularly the quality of life and economic burden on both patients and society as a whole.  She is also interested in testing new technologies in the delivery of dermatologic care. She has contributed to numerous phase I-IV clinical studies of novel therapeutic regimens for the treatment of both inflammatory skin disorders and skin cancers.

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