Our Impact in 2022
People living with ALS and their families come first in everything we do, and everything we do supports the search for effective treatments and cures for ALS. The Georgia Chapter of The ALS Association is committed to improving outcomes for the ALS community through evidence-based approaches, innovation, collaboration, and fiscal responsibility.
The Georgia Chapter exists to ensure that anyone facing ALS has someone to turn to for expert advice, essential equipment and support, community, caring conversations, and so much more. Now and always, we remain committed to meeting the needs of individuals and families facing ALS that we serve throughout the state of Georgia. Everything we do is made possible by the generosity of the ALS community and those who care about them. Thank you for your ongoing dedication and support of our mission.
People with ALS Served
Care Services Successes
The Georgia Chapter continued to offer critically-needed information, support, and resources to help with the daily challenges of living with ALS. Over 545 people with ALS and their loved ones were served throughout the state of Georgia. We offered a wide array of programs, from professional care management to educational webinars and support groups. We also provided direct assistance to people with ALS and their families for equipment, respite care, transportation and activities that benefit children and teens
Kostiuk Care Grant Program
Care Grant funds help people living with ALS and their caregivers with things like home modifications, technology, respite care, and co-pays. Our chapter approved $203,000 in financial assistance grants to families living with ALS.
Chapter Grants Approved
In-Home Care Hours Provided
The Sally Panfel In-Home Care & Respite Program
The Georgia Chapter’s In-Home Care program is designed to assist in providing in-home ADL care and respite, while families work to secure more permanent support with day-to-day care. In 2022, we were able to provide over 4,800 hours of in-home care supporting families.
The Paul B. Williams Transportation Program
The Georgia Chapter’s Transportation program provides access to non-emergency transportation, accessible van rentals, van adaptations and more. In 2022, we provided 55 non-emergency trips to clinic & medical appointments and 37 accessible-van rentals to ALS families.
Invested in ALS Research
We helped fuel a significant number of research innovations, advancements in drug development and clinical trials, and new collaborations designed to accelerate the pace of discovery. The ALS Association has invested over $122 million in ALS research since the 2014 ALS Ice Bucket Challenge.
Our global approach to funding research serves to fuel the most promising projects by pioneering ALS scientists. The FDA announced their approval of RELYVRIO (AMX0035). The drug has been shown to slow the progression of the disease and extend life by several months. The ALS Association funded initial research and the Phase 2 clinical trial and worked with additional ALS organizations to advocate for FDA approval.
People like you are pivotal to pursuing public policies that can assist those living with ALS. This past year advocates delivered more than 16,000 messages to policymakers and hosted more than 500 virtual meetings with lawmakers across the country. Notable results included:
Justice for ALS Veterans Act: Introduced to the House & Senate in 2021, we saw increased support in 2022 through advocacy efforts. Congress must support and pass the Justice for ALS Veterans Act to increase Dependency and Indemnity Compensation (DIC) for surviving spouses and families of veterans who died of service-connected ALS, regardless of how long they lived with the disease.
Relyvrio is Approved:The U.S. Food and Drug Administration approved AMX0035 (Relyvrio) for the treatment of ALS in September 2022. Twice in 2022, The ALS Association leadership and ALS community advocates testified before the FDA’s advisory committee, imploring them to approve AMX0035. After the advisory committee narrowly voted against the approval, the Association circulated a letter signed by several dozen leading ALS clinicians telling the FDA they want to be able to discuss AMX0035 with their patients as a viable treatment option for ALS. When the FDA Advisory Committee reconvened, we again testified before the committee on the need for urgency. The committee finally voted unanimously to recommend approving the drug in September 2022.
Messages Delivered to Policymakers Nationwide
Where Are Your Donations Going?
.74 Cents of Every Dollar Raised Goes to Our Programs
Support Group Participants
Active research projects worldwide
Patients received care and clinical management of ALS through one of our 3 multidisciplinary centers
Pieces of equipment loaned through the Ricky P. Sweat Equipment Loan & Assistive Technology Program
Educational webinars provided with expert speakers on a variety of topics
Newly diagnosed individuals with ALS provided with consultation and information resources