In my many years of organizing doctors, patients, and community members to create change at the federal, state, and local levels, I’ve often been awestruck by busy, overstretched people who show up to meetings and raise their hands to take action. Many doctors have told me that advocacy has helped them manage burnout by turning their feelings of hopelessness and helplessness into strength, solidarity, and real change.
How ALS Caregivers and Patients Advocate for Better Policies
Advocacy can feel like an overwhelming idea when you are already dealing with a lot. If you or someone you care for has ALS, there's so much to manage—from doctor visits to figuring out if you can still work, to making your home accessible. But, in ALS, there are also many policies that can make a big difference. We need research to better understand the disease and find a cure. We need improved support services that recognize the particular challenges of this disease.
While advocacy is not for everyone, for many it can be life changing.
Why get involved in advocacy on top of everything else?
People get involved in advocacy for different reasons, both for the greater good and for their own benefit.
Troy Fields, who is living with ALS, feels that it’s his responsibility to advocate so the next generation of patients don’t have to go through what current patients have gone through. He believes strongly that advocacy works, as evidenced by the many wins the ALS community has had over the past five years – from social security disability benefits, to expanded access to care, increase in research funding at NIH, and increased funding for veterans who get ALS twice as much as the rest of the population.
For Jodi O’Donnell-Ames, founder of Hope Loves Company and caregiver for husband who had ALS, advocacy was an opportunity for her and her husband to feel like they were doing something in their fight against ALS. They shared their story and their voices on television, in newspaper articles, and at an FDA hearing.
Katrina Byrd’s partner, Dora, passed away just 76 days after she was diagnosed with ALS. They barely had time to understand what ALS was before she was gone. Katrina turned to advocacy just four weeks after as a way to manage her grief. She uses her talents as an artist to transform grief into action and helping others.
How do you get involved?
Even the simple act of telling your story or signing up for a mailing list can be a great way to get started.
Mandi Bailey assures that there is a place for everyone and people with all abilities. Advocacy organizations can help you use your voice in a way you never thought you could. Zoe Lalji agrees with Mandi and shares that one way to start is by raising awareness in your community but talking to people about the disease because many people don’t know anything about it.
Jennifer Hjelle of the ALS Association explains that you don’t have to know everything about how the government works. There are organizations to help you figure that out, to let you know what issues are being debated by policymakers, to give you easy action options like pressing a button to send a note to Congress. Or they can help you get up to meeting with your members of Congress. The most important thing you can do is tell your story.
Brian Wallach and Sandra Abrevaya are a husband and wife team of lawyers who had prestigious government positions including in the White House. When Brian was diagnosed with ALS, they shifted their careers to co-found and lead I Am ALS, which has been a leader in ALS advocacy since 2017. Today, Brian needs Sandra to help interpret his words, but he remains an inspiration. In his words, “The first step is believing you can make a difference, and I know you can.”
In my advocacy work, I’ve made many lifelong friends, proving what an organizer told me early on: “You come for the cause and stay for the people.” When it is the right time for you and your family, you can take a look at the many ALS organizations that can help you make a difference.
