Board of Directors

The Executive board

JIll Vedder

CO-FOUNDER AND CHAIRWOMAN

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.

Jill is a serial philanthropist who is also active with the Vitalogy Foundation.

Eddie Vedder

CO-FOUNDER

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 the Fullmers' son, Michael, 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.

ARI DESHE, MA

VICE CHAIRMAN

Ari Deshe is the founder and former chairman of Safe Auto Insurance Co. He is also a past member of the Board of Directors of American Eagle Outfitters and Retail Ventures, Inc. Ari was born with EB Simplex, as were three of his children. Ari and his family, including his wife, Ann, and their children Elie, David, Dara and Daniel, together with spouses have decided to take an active role in making the mission to find a cure for EB a reality. Ari received his BS and MA in Finance and Banking from the University of Alabama.

JENNifer Kauf

SECRETARY

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

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

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.
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

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

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 the Research Committee of the EBRP and is Mom to three children, including John Hudson (22 years old) who suffers from severe RDEB and is her inspiration to serve the Board.

Dr. Greg Licholai

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

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

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. In addition, Michael
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

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.