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In Loving Memory of Jonathan Weiss

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Jonathan WeissJonathan Weiss, 38, died from complications following a heart transplant on July 1, 2004 at the University of Washington Medical Center. Jonathan was the motivating force for the formation of the Alliance of Genetic Support Groups (now Genetic Alliance) by his mother, Joan O. Weiss, who recognized the value of a support organization because she did not have one when Jonathan was born with a congenital heart defect. He had a novel heart procedure at birth, open heart surgery at age 2, a heart attack and the implantation of a pacemaker-defibrillator while in his teens, the implantation of a heart pump, and a heart transplant. He spent a good portion of his life in hospitals and emergency rooms and was so scarred physically by the things done to him that he would not go without a shirt, even at the beach.

Jonathan enjoyed anything to do with the theater and cinema. He was an actor, director, and stage manager while in college and graduate school, and subsequently in small theatres locally and in summer stock. He had an enormous personal library of CDs and worked in the music department of a local retail outlet before becoming the sales manager of the used CD operation of a neighborhood music store. He wrote beautifully and was the editor of his high school literary magazine, despite having severe learning disabilities. He also was a fine amateur photographer.

Jonathan grew up in the Bethesda-Chevy Chase area and graduated from the local high school, B-CC. He also was a graduate of Bard College in 1989, returning to Bethesda to live and work after college. Before starting his career in music sales, Jonathan worked on the staff of the Alliance of Genetic Support Groups (now Genetic Alliance) shortly after its inception, helping develop the helpline, put together and man Alliance exhibits, and co-host the Alliance’s 10th year gala in 1996 which honored his mother who was retiring as first Executive Director of Genetic Alliance.Jonathan Weiss

In 2002, Jonathan moved from Maryland to Seattle, WA, when his neurologist brother joined the University of Washington Medical Center faculty. Jonathan loved his new apartment in Queen Anne, visiting with his two little nephews, sitting on his balcony watching the world go by, emailing his friends back home, listening to his favorite music, and wandering into the area’s many shops, bookstores, and restaurants. On July 4, 2004, he was buried in a cemetery in Queen Anne under an old oak tree, just a few blocks from his apartment. Many of Jonathan’s friends, admiring nurses, and individuals who worked with him at the Alliance describe him as their hero because he was so courageous throughout his life.

Genetic Alliance celebrates Jonathan’s life. Because so many of us face life and death each day, we poignantly know Joan’s loss and are grateful that Jonathan inspired her to give all of us so much.

Contributions may be made to the Jonathan Weiss Memorial Fund, Genetic Alliance, 4301 Connecticut Avenue, Suite 404, Washington, DC 20008-2369, or by online donation.

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