Page 7 - ALSA-CT-Annual-Report-2021-2022

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ADVOCACY
Recent successes in ALS Advocacy include:
UPDATE
• Mobilized ALS advocates and Congress to pass the ACT for ALS Act to speed the discovery
of new treatments for people living with ALS through more clinical trials and expanded access to investigational drugs.
• Pushed the FDA to fast-track its review of Amylyx’s AMX0035, a promising new ALS treatment, through the dynamic, public “We Can’t Wait” Action Meeting.
• Preserved protections for pre-existing conditions for people living with ALS in collaboration with other leading patient advocacy groups.
• Lobbied governors to support people living with ALS and their families on access to care through telehealth and COVID-19 vaccine prioritization.
• Advocated to boost funding for the National Institutes of Health, resulting in an estimated $115 million in funding for ALS research in fiscal year 2022.
The ALS Association works hard to secure resources to support treatment and research for the entire ALS community. Our nationwide network of staff and advocates are essential to our efforts at the federal, state and local levels in advancing our mission.
Connecticut advocates, made up of people living with ALS, caregivers, and Chapter Staff, participate in the annual ALS Association Advocacy and Public Policy Conference, where they discuss the urgent need
for government to support access to treatments and a cure.
“ I tell whomever I run across about the amazing
work that the ALS Association does...you do more to personally impact people’s lives than all of the larger, more well known charities. Honestly...some days the only bright spot when I’m overwhelmed is knowing that a particularly stressful issue will get resolved by just connecting with you.”
-PERSON LIVING WITH ALS
ALS ASSOCIATION CONNECTICUT CHAPTER