Cheryl Cook, a dedicated public servant in Simsbury, Connecticut, has battled through a life-altering diagnosis of amyotrophic lateral sclerosis (ALS). Officially diagnosed in April 2023, this neurodegenerative disease has drastically affected her ability to walk, feed herself, and even breathe without assistance. Despite these challenges, Cook continues to serve her community as chair of the Simsbury Housing Authority and the Diversity, Equity, and Inclusion (DEI) Council.
Cook’s diagnosis has not only been a personal struggle but also a community concern. As of now, approximately 400 individuals in Connecticut are living with ALS, according to ALS United Connecticut. The disease, which impacts motor function and gradually diminishes the ability to perform daily tasks, has forced Cook to confront significant lifestyle changes. She now requires oxygen at night and has adapted her home for accessibility, moving from her residence of 20 years to a ranch-style house.
Commitment to Community Service
Cheryl Cook’s contributions to Simsbury span over three decades. Her work includes roles on the Board of Selectmen and the Aging and Disability Commission, along with extensive volunteerism with organizations such as the Girl Scouts and the Parent Teacher Organization (PTO). Recently recognized as the town’s Hometown Hero, Cook has been celebrated for her advocacy for people with disabilities and her commitment to social services.
Despite facing her own health challenges, Cook remains a pivotal figure in community discussions. Following a troubling incident in 2019 involving students in blackface, she took the initiative to establish the Spirit Council, now the DEI Council, aimed at fostering dialogue and understanding among community members. “It was eye-opening and inspired me to keep going with that work,” Cook noted, emphasizing her dedication to creating a more inclusive community.
Living with ALS
The progression of ALS has introduced Cook to a range of physical limitations. Initially, she attributed her symptoms to arthritis following foot surgery. However, the condition worsened, leading to a diagnosis that has profoundly changed her life. Dr. Cristina Viguera Altolaguirre, a neurologist at UConn Health, explains that ALS affects motor nerves, leading to difficulties in movement, speech, and ultimately breathing. The average survival rate for ALS patients is around three to five years.
Cook has been receiving comprehensive care through the UConn Health ALS and MD program, which integrates specialists from various fields to address the multifaceted needs of ALS patients. “It has done everything it possibly could for me,” she said, highlighting the program’s ability to arrange for specialists to visit her home, thus accommodating her condition.
While treatments such as Riluzole and Radicava can slow disease progression by approximately 30%, new gene therapies provide hope for those with specific genetic markers. Dr. Altolaguirre stated that these therapies represent significant progress in ALS treatment.
Advocacy and Reflection
Prior to her diagnosis, Cook was an active advocate for individuals with disabilities, influenced by her personal experiences as a parent to a child with Fragile X syndrome. She played a crucial role in founding the Fragile X Society of Connecticut, actively lobbying for research funding in Washington, D.C. Reflecting on her life’s work, Cook has found purpose in community service, stating, “Volunteering is something that everybody should think about — doing something for someone else.”
Despite the emotional and physical toll of her condition, Cook maintains a positive outlook, supported by family and friends. She shared how a recent card from friends, depicting a group of women with the message “You have an army behind you,” serves as a source of strength.
Cook’s journey illustrates not only the challenges posed by ALS but also the resilience and commitment of individuals who continue to serve their communities under difficult circumstances. She remains a beacon of hope and determination, emphasizing that community service holds immense value in her life. As she navigates her health challenges, she encourages others to remain engaged and hopeful, reinforcing the notion that advancements in ALS care are continuously evolving.
