The FD/MAS Alliance honors and remembers individuals who have made an impact on the FD/MAS community through their support, advocacy, and examples of lives well-lived. These individuals live on in our hearts and in our work – their light remains. We are forever grateful.
In April 2022, Marilyn Levin passed away and requested that in lieu of flowers, donations be sent to the FD/MAS Alliance to continue her family’s legacy to seek treatments and cures for not only her adored granddaughter Carly, who is diagnosed with FD, but also for everyone who suffers from FD/MAS. A cherished wife, mom, grandmother, aunt, and friend to many, her kindness endures.
Ann Molitor passed away at the age of 103 in 2020. Ann was a storyteller, a reader, and a lover of art and poetry. She loved to sing, travel and meet with friends. She wanted to know about your family, your plans for the future, and your views on current events. Ann loved to wear bright colors and tell jokes, and Ann was an FD/MAS patient. We will continue to celebrate Ann’s birthday each Oct 10 by wearing bright colors.
Charlie recognized that having a rare disease can be isolating, with many unanswered questions. Through the early power of the internet and list-serves, a small group of people with fibrous dysplasia met at the Harles’ house in 2000. While soaking in the hot tub, the group was determined to form an association to spread information about fibrous dysplasia for individuals and medical professionals. In 2004, the Fibrous Dysplasia Foundation was incorporated, and Charlie served as its president for the next 11 years. Charlie’s impact on the FD/MAS community is evident in the incredible legacy of the Fibrous Dysplasia Foundation dba FD/MAS Alliance, the community he helped build, and the research he encouraged.
Patricia Cook was born on November 8, 1946, and lived with FD/MAS when not much was known about the disease. She passed away on November 14, 1992, and unfortunately, there are few pictures of her because she didn’t like to have her picture taken. Pat and her family did not have the support from the FD/MAS community or resources that FD/MAS Alliance now makes available. The FD/MAS Alliance is grateful to Norman Cook, her brother, who, by his financial pledge and support, is determined to make a difference so that no patient will have to endure the challenges Pat faced. The FD/MAS Alliance is inspired by Norman’s generosity and Pat’s spirit.
Include FD/MAS Alliance in your estate plan through a bequest, charitable gift annuity, or other giving vehicles, or support FD/MAS with a gift of stock. Consult your tax advisor for information about the tax benefits. Please call or email Adrienne McBride, Executive Director, (301) 467-8979 for more information.
This Remembrance page is made possible in part by the support of Norman Cook.
