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For over 25 years, Allison W. Brady has been a passionate fundraiser and advocate for rare diseases medical research and patients.

She serves on the board of Gene Spotlight, Inc., a non-profit dedicated to raising money to sponsor medical research for rare diseases. She has organized fundraising events for the charity through Give Miami Day, De Beers (jewelry store), Ann Taylor (clothing store), online charity auctions with Miley Cyrus, Keith Urban, Miami Marlins via CharityBuzz to raise funds for Gene Spotlight. She co-runs an annual bike team for Team Gene Spotlight to raise funds for the Million Dollar Bike Ride with Penn Medicine to fund research grants. Gene Spotlight is the largest outside investor in Jupiter orphan Therapeutics, Inc.

Her fundraising efforts for rare diseases began with gala events she organized called “Songs for Sophia” with performances by opera’s finest including Placido Domingo, Denyce Graves, Bryn Terfel, and Frederica von Stade. The money raised from those events supported medical research for a rare bone disease known as FOP.

She also worked with the press outreach, including having the Associated Press cover these events, which led to them following the scientific and medical progress of FOP for over a decade as new techniques using shark cartilage were developed and the FOP gene was discovered at CHOP by Dr. Fred Kaplan at UPENN. In part, due to her success in fundraising and awareness of FOP, in 2007, Allison was the sole recipient of the University of Pennsylvania’s Young Alumni of the Year Award.

She actively supports several other medical based charities including EveryLife Foundation for Rare Diseases, Jackson Health Foundation, Penn Medicine, Mount Sinai Miami Beach, Mount Sinai New York City, Kids Hear Now, Nicklaus Children’s Hospital, Sabrina Cohen Foundation, United HomeCare Services, and more.