En hommage à Ann Biggs-Williams : Un pilier de la communauté FSHD

By June Kinoshita, FSHD Society

It is with deep sadness and gratitude that the FSHD Society honors the memory of beloved community member and long-time volunteer, Ann Biggs-Williams, who passed away on July 20, at age 74. Ann lived her entire life in Alabama and worked as head librarian at Coastal Alabama Community College (formerly Jefferson Davis Community College) in Brewton, Alabama, until her retirement.

Ann’s involvement with the FSHD Society dates back well before many of us were part of the organization. She was already serving on the Board of Directors when I joined the Society in 2012. When she stepped off the board in 2017, I learned she had served since 1999, making her the longest-serving member in the Society’s history.

Ann was someone who led with quiet determination to ensure patients and families remained front and center to everything the Society undertook.  She was more than just a dedicated advocate—she was a friend, mentor, historian, fundraiser, and a cherished presence in our community.

Ann attended many patient conferences, starting with the first FSH Society patient conference in San Diego in 1997. In recent years, Ann stayed connected with others through the Society’s Zoom groups including the Wellness Hour, WOW (Women on Wellness), and Feeling Fit.

Ann was always ready to lend a thoughtful perspective or a helping hand. Her experience and insight were invaluable to the Society. As a librarian, she kept meticulous records—curating a personal repository of FSH Society photographs, meeting programs, and historical materials. When we needed help identifying individuals in an old photo or verifying details for a newsletter, Ann was always the person we turned to. With her passing, we not only lose a dear friend, but also a part of our communal memory.

Ann volunteered in the Society’s peer-to-peer counseling program, giving newly diagnosed FSHD patients practical advice and letting them know they would never be alone. She also led the Gulf FSHD Support Group for many years. Covering Alabama, Florida Louisiana and Mississippi, the group connected many people with FSH who had never met anyone else with the condition, giving them hope, enabling them to discover strength they hadn’t known they possessed, and generating enthusiasm for the Society. The group met in all of the states for many years. Ann’s deep dedication to supporting individuals and families living with FSHD helped shape the strong, supportive network we have today.

Ann’s generosity extended beyond her time and knowledge. She helped raise essential funds for the Society, both by hosting personal fundraisers and by engaging a local friend whose family foundation became a significant donor. She and her husband Mike sponsored two boat trips on the Mobile Tensaw Delta to raise money for the Society. She represented the Society in many events over the years. In 2016, she traveled to Pensacola, Florida, to greet Diane Lea on behalf of the Society at the Grand Finale Party at the culmination of Lea’s 50-day bicycle ride from San Diego to Pensacola that raised money and awareness for 50 causes, including FSHD.

Ann truly embodied the spirit of the FSHD Society. She leaves a lasting legacy that reminds us of the power of service, memory, and humanity.

Ann is survived by her husband, Michael Williams; stepsons Mata (Mae)Williams and Durak Williams; grandchild Flannery (Jeremy) Standford; and great-grandchildren Addison, Bayden, and Fynnegan. We send our deepest sympathies to Ann’s loved ones and to all those whose lives she touched. May her memory be a blessing and may we each carry forward a piece of the light and passion she so freely shared.

For more about Ann’s life, please read her obituary here.