In recognition of National Volunteer Month, we are shining a spotlight on some of The ALS Association’s amazing, dedicated volunteers and highlighting the incredible work they are doing to support our mission.
Volunteers are the backbone of many non-profit organizations, and The ALS Association is no exception. Without the hard work and commitment of individuals around the country who graciously give their time to help support the ALS community, we would not be able to do what we do every day.
We recently spoke with Jo-Ann Clynch, volunteer and board member for The ALS Association Florida Chapter, to learn more about her personal connection to ALS and her passion to join the fight against the disease.
Jo-Ann is former caregiver to her mother who lost her battle with ALS in 2009. She described her mother as vibrant and full of life, even as she lost the ability to walk, eat, move and speak due to the disease. Jo-Ann’s determined and energetic father was launched into a 24/7, primary caregiver role, while she helped as a secondary caregiver. “My mother and father were incredibly strong, and we never gave in or gave up,” she said. “The day my mother passed away, even the nurses sobbed and said, ‘we will never forget the three of you; you are a remarkable and dedicated family.’”
Jo-Ann shared that being a caregiver was both emotionally challenging and physically demanding. “Losing my mother to such a devasting disease and witnessing my father’s tireless efforts was a very painful experience with a deeply profound and lasting impact on me,” she said. She says that if she can save even one person and one family from the plight of this deadly and devastating disease, her time spent supporting the ALS community will have been worth the outcome.
Passionate about ALS advocacy, Jo-Ann volunteers as a board member at The ALS Association Florida Chapter and chair for the Chapter’s Advocacy Committee, all while managing her full-time career in cybersecurity. Together, with the Chapter’s board executive leadership and CEO, she develops and drives strategies to help people living with ALS and their families, including creating a robust advocacy network across the state of Florida.
Jo-Ann’s participation has contributed to the passing of game changing legislation, including the Bitner Plante ALS Initiative of Florida, a key funding program to benefit people living with ALS seeking treatment at the Association’s ALS Centers of Excellence located at Mayo Clinic, Jacksonville; University of South Florida, Tampa; University of Miami; and UF Health Jacksonville. Her ardent appeals have helped the chapter recruit key legislative sponsors and increase state funding from $100,000 to now $1MM each year.
On a federal level, Jo-Ann has joined advocates around the country over the last 10 years at the Association’s National Advocacy Conference, fighting to advance public policies that will empower people living with ALS and their families. The hard work and dedication of these advocates has resulted in eliminating the waiting period for people with ALS who receive Medicare benefits due to disability, and increased federal funding at the Department of Defense ALS Research Program and at the National Institutes of Health for research to find treatments and a cure for ALS.
Jo-Ann became committed to engaging the veteran community with her father’s help when she learned that veterans are more likely to get the disease. Association advocacy efforts contributed to the implementation of historic regulations at the Department of Veterans Affairs, designating ALS as a service-connected disease, ensuring that veterans living with ALS and their survivors have access to VA benefits, including health care and disability benefits. This past year she was instrumental in garnering support and funding from a local veteran’s group at the first ever South Florida CEO soak raising over $14,000 for ALS research.
When asked what she would say to someone thinking about volunteering, Jo-Ann quickly chimed in, “We look forward to meeting you! Whether you walk, ride, get soaked or write emails to legislators, we appreciate all of our fellow volunteers and advocates.” She went on to say, “The community is made up of extremely resilient and positive people who pull together and have fun doing whatever it takes to make this a livable, and ultimately, a curable disease.”
Special thanks to Jo-Ann and the team at The ALS Association Florida Chapter for allowing us to share her inspiring story of her fight for the ALS community.
To continue to follow stories from people in the ALS community and to learn more about the disease, follow our blog at als.org/blog.