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ALS Advocacy with Director of Programs, Amy

Advocacy is incredibly important to make significant change in the fight to end ALS. At ALS United Connecticut, we provide local services, support research, and participate in Advocacy. Read below as Director of Programs, Amy Chickles, describes the importance of advocacy and how you can get involved.  Donate
Tell us when you started at the organization and what you do?
I started here in the pandemic during 2021 and am the Director of Programs, overseeing the incredible work of our social workers, assessing our programs in how they are run and their impact, and I work on our advocacy efforts.

Can you talk more about advocacy? What is it? Why is it important?
Advocacy is incredibly important to create change and awareness. For ALS, this means that we talk directly to state and national legislators about living with ALS and how it is essential that they support funding and bills to assist our families, contribute to research, and continue to support our veterans. Because of the advocacy efforts from the ALS Community, people with ALS are eligible for Medicare immediately after diagnosis. Various government agencies, including the Department of Defense and the CDC, invest millions of dollars to support research in search of treatments and cures. Advocacy is more than lobbying for bills – it means education and awareness year-round. Every time you talk to someone about ALS, you’re advocating!  

What are the plans for ALS United Connecticut for advocacy?
We are looking to have more of a local presence with our advocacy efforts- this means testifying in support of certain bills, involving our pALS and caregivers, and establishing relationships with our state legislators and other organizations in Connecticut. Working together, we can hopefully establish more support for both people with ALS and others dealing with health care issues.

How can someone reach out to you about getting involved?
They can email me directly at

What are your plans this holiday? I am excited to celebrate with my children. My son will be home from college after his first semester! I am excited to bake our famous cookies together, relax and keep our cat out of the tree.
Your donation helps support efforts like our Advocacy Program! Donate Today!

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