The Deshe Family

For the Deshe Family, the mission is clear, “We would love to see this disease gone, and we want to be a part of helping eradicate it—forever.” Ari Deshe, the founder and chairman of Safe Auto Insurance Co., 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 their spouses have decided to take an active role in making the mission to find a cure for EB a reality. As key leaders and supporters of EB Research Partnership, the Deshes have already generously donated more than $8 million, dedicated to funding research for innovative breakthrough treatments and ultimately a cure for all forms of EB.

​Their giving has funded medical advancements at leading global institutions such as Stanford University and the University of Minnesota, where scientific research teams are pioneering new treatments and an eventual cure for EB. Their support is accelerating life-saving research from university labs into clinical trials, thereby shortening the timeframe to commercialization and providing vital help to people who suffer from EB. The Deshe Family selected EBRP after an extensive search conducted by the Philanthropic Advisory Services at Bessemer Trust.

"It is hard to find a stronger partner in the fight to cure EB than the Deshe family, and we are very fortunate to have the tremendous support of Ari, Ann, Elie, David, Dara and Daniel," said Alex Silver, Chairman of EBRP. "The Deshe family wants to move this cause forward and change the lives of all those suffering from EB. We are grateful for their commitment to seeing this through. You hope for a family or donor who has compassion and heart to stay involved to help accelerate progress."

In addition to their philanthropy, Ari and Daniel serve on EBRP’s Board of Directors and the family hosts an annual event to help advance the foundation's mission to back the most promising scientific research around the world.

DR. JEFF HEDDLES

Dr. Jeff Heddles (second from right)

Sometimes you’re just in the right place, at the right time, for the right reason. While having a blast at a California Pearl Jam show in 2021, Dr. Jeff Heddles was moved by the sight of a young boy on stage playing along with a tambourine. The joy of this child getting to be a part of the show was captivating enough, but what intrigued Heddles even more was the fact that he was wrapped in bandages.

“People often ask me how I got involved with EBRP,” said Jeff. “Well, I was watching a Pearl Jam concert, and at the end of the show, when I was absorbing this amazing moment, I noticed a young man on stage, and he was having the time of his life playing the tambourine, simply having a blast, but I noticed that he was also struggling with something.”

“When I got home, I did a little Google searching, and I learned that this young man was afflicted with Epidermolysis Bullosa, or EB. As I read more about EB, I thought to myself, imagine what it must be like having a child with skin so fragile that you have to be extremely careful even hugging them. It really hit me just how devasting this disease can be.”

Becoming familiar with EB was a life-changing experience for Jeff, who has now become a major EBRP donor, supporter, and advocate. Since 2022, he has made substantial monetary donations to EBRP, served as a spokesperson for EBRP on a regional and national level, and taken a leadership role in numerous EBRP events, including our annual Venture Into Cures gala.

In 2024, Jeff decided to match all donations up to $250,000 as part of our 2024 Wings of Change campaign, which coincided with EB Awareness Week. Due to Jeff’s efforts, we were able to raise more than $500,000 as part of this campaign.

Outside of his generous Wings of Change donation match, Jeff has personally donated more than $750,000 to EBRP since he became involved with our organization, making him a million dollar donor. We cannot thank him enough for his amazing contributions to our mission, both financially and through his ongoing engagement with EBRP on a worldwide scale.

A chiropractor who ran a practice in Chicago for more than 20 years, Jeff shifted his focus to philanthropy following his retirement in 2022. A musician himself, he performs with several bands in the Chicago area and also recently played bass with The Pearl Jam Experience, one of the world’s premier Pearl Jam tribute bands, as part of an EBRP fundraiser at the Prince Bandroom in Melbourne, Australia.

In addition to his work with EBRP, Jeff is also heavily involved with the West Point School of Music, a Chicago organization that works to promote academic and personal success among urban youth through music instruction and performance, and the D’Addario Foundation, which helps support the West Point School through scholarship funds, monetary donations, and the creation of music-based programs.

While Jeff’s love of music, and Pearl Jam in particular, is what initially made him aware of EB, his selfless compassion is what led him to become a vital part of the EB community.

“I didn’t know anything about EB before that concert,” Jeff said. “But once I learned how awful this disease is, and then discovered all the amazing research that EBRP is funding to find a cure, my life’s perspective was changed.”

“I am honored to be a part of the EBRP mission. Since becoming involved with EBRP, I’ve met the most amazing community of supporters, researchers, and doctors—and all of the people behind the scenes at EBRP. To every one of the families affected by EB, I just want to say that you are not alone. You have an army of people fighting behind you and alongside you, every step of the way as we work toward our common goal. I believe we are on the cusp of exceptionally viable therapies, and that a cure is within reach.”