Patient Spotlight: Ann Molitor

Brighten the Corner Where you Stand: Remembering Ann Molitor

In 1954,  Ann Molitor found herself living alone in Seattle. Her first marriage had come to an end, and she was starting again on her own. To cheer herself up, she would light candles for her dinner table each night, even though she ate simply and alone. But soon, Ann began to notice that her light was not alone. Others in the neighborhood must have seen her candles in the window and started to add candles to their table too.

That was Ann. Always trying to connect with others, to bring happiness and warmth to the world around her. Ann Molitor passed away at the end of February 2020 at the age of 103. She took countless stories, insights, and ideas about the world around her and left behind many remarkable friends and family that miss her dearly. She also left a very generous $50,000 donation to the Fibrous Dysplasia Foundation and the FD/MAS community, with an additional gift forthcoming.

Ann was a storyteller, a reader, and a lover of art and poetry. She liked to memorize and recite favorite poems as a way to stay sharp and find joy. She loved to sing, and to travel and meet with friends. She was a diligent correspondent and didn’t suffer small talk. She wanted to know about your family, your plans for the future, and your views on current events. She kept a portfolio of stocks that she tracked and managed. Ann loved to wear bright colors and tell jokes, and Ann was an FD/MAS patient.

“One of the hardest aspects of losing Ann was that, even at 103, she didn’t feel ready to go,” Missy Curtis, a longtime friend of Ann’s shared with us, “Her body was struggling, but her mind remained sharp as ever until the very end.” Missy visited with Ann and remained close with her through her cancer diagnosis and hospice care. “In the final days, as Ann was reflecting on her life, she shared with me that she was especially proud of how she had impacted people in the FD/MAS community and given them a reason to hope,” said Missy.

FDF shared Ann’s story in 2016. “When we spoke with Ann about her experiences, she really downplayed her disease and any hardship she had faced,” said Tovah Burstein, FDF’s Community Engagement Director, “Even though she was diagnosed at a time when there was hardly any information out there about FD/MAS, and very few known patients, she did not let her diagnosis hold her back.”

Ann also insisted that she was not an inspiration or a role model, but all the parents and patients FDF spoke with proved otherwise. “Especially when someone receives a new diagnosis of FD/MAS, they can feel overwhelmed and defeated. They often ask us what their future will look like,” said Burstein, “When we share Ann’s story, there is a distinct change in their outlook. They see how she lived a long, adventurous life, full of color and warm connections, and this calms many of their worst fears and concerns.”

Ann was very informed and engaged as an FD/MAS patient. She kept her doctors on their toes, always making jokes and sarcastic wisecracks during her visits. “I think doctors often assumed that, because she was old, she wouldn’t necessarily understand everything, but she had a better grasp of her medical records than they did, and would correct them when they made mistakes,” recalls Missy. She also took great pride in her long-standing friendship with experts in the field. She was a regular correspondent with Dr. Andrew Shenker, FDF’s Scientific Advisory Chair, and was very touched to hear from both him and Dr. Mike Collins of the NIH when she was transferred to hospice care. “She had a remarkable group of friends, all very active, all with inspiring careers and life stories,” Missy shared. The calls and letters she received from the FD/MAS community meant a lot to her and are just one example of how much she enjoyed connecting with others.

While Ann did not hide her diagnosis from her friends and family, she did not dwell on it either. “She showed me her XRays, and I knew she had the disease, but it wasn’t her way to focus on those things,” recalled Missy. “She always encouraged people to move past their troubles and limitations. It was her mission in life to make others smile.” When Ann lost a tooth, already past 100 years of age, she still wanted to have the tooth replaced. “That’s how important smiling was to her. She just filled any space with light.”

Ann loved to wear bright colors. She said that the vibrant look meant your hormones were in balance, an especially poignant idea for a woman who thrived for 103 years with FD/MAS, a disease that can affect the endocrine system. October 10th, 2020 would have been Ann’s 104th birthday, and to celebrate, FDF staff and Board will be donning bright clothing in celebration of Ann’s brilliant life and impact. We invite others in the FD/MAS community, those touched by Ann personally or inspired by her story and spirit, to join us.