It’s going to take all of us working together to make ALS a livable disease and ultimately find a cure. It’s going to take people living with ALS, their caregivers, family members and loved ones across the country impassioned to pursue public policies that help discover new treatments, empower people living with ALS to live life on their own terms and help reduce harms associated with the disease.
It’s going to take people like Troy Fields, volunteer and board member for The ALS Association Florida Chapter. Diagnosed with ALS in 2016, Troy had everything going for him: a beautiful and growing family and a highly successful career that allowed him to travel internationally. But instead of focusing on what he was going to lose, Troy opted to channel his energies to be an agent of change for the ALS community. “I know that I will not likely reach the ‘promised land,’ where ALS treatments and cures are available. But I would hope that when it is my day and someone is giving my eulogy, they can say that I did my all to ensure others could reach that promised land.”
When Brett Schoenecker and his wife Jeannine learned of his ALS diagnosis in 2018 and the devastating effects it often has on a person and their family, they realized their life was forever changed. Determined to help change the trajectory of this disease, they joined forces with the Association’s Western Pennsylvania Chapter. “Jeannine and I have decided to dedicate our remaining time together to advocate for a cure for ALS, so that future generations will not have to wither and die from this devastating disease,” says Brett.
It's also going to take people like Daniel Cramer who advocates in honor of his mother who lost her battle with ALS in 2021. While helping to care for his mother, Daniel joined The ALS Association as Associate Director of Public Policy Initiatives. “The day of her diagnosis was the day I decided I needed to put my experience in policy and advocacy to work for the ALS community,” says Daniel. “Her diagnosis and our conversations showed that I needed to lend my voice to make change where I can. We called it a ‘silver lining’ of her diagnosis.”
Military veteran Peter Sawyer of Mechanicsburg, PA has been living with ALS for five years. Together with his wife and caregiver, Lura, they joined the team at the Greater Philadelphia Chapter and have become tireless advocates for the Association’s mission. Knowing military veterans are more likely to be diagnosed with ALS, the Sawyers share their story, advocating on behalf of all veterans living with the disease. “Our legislators are often unaware of how much devastation ALS can cause and awareness is key,” says Lura.
It will also take people like Carianne and Chris Meystrik. When Cari was diagnosed with ALS in 1998, the couple thought their dreams of growing old together and raising a family were over. Instead, despite the various obstacles brought on by ALS, the Meystrik family has had incredible adventures and made precious memories that carry them through the tough times. Alongside the Tennessee Chapter, they continue to fight for the ALS community. “I am committed, as always, to keep advocating for the ALS community to bring about more awareness, better quality of life, and increase in funding for research to find promising treatments and, one day, a cure," says Cari.
And it will take people like YOU. Whether you have a personal connection to ALS or just want to help make a difference for families impacted by the disease, becoming an advocate is easy. Register today for our free 2022 National ALS Virtual Advocacy Conference coming up next week, June 14-16, to get started.
Together we will create a world without ALS.
If you are an ALS advocate and want to share YOUR “why” with The ALS community, please contact us at [email protected].
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.