Our Impact in 2023
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. ALS United of Georgia is committed to improving outcomes for the ALS community through evidence-based approaches, innovation, collaboration, and fiscal responsibility.
ALS United of Georgia 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.
592
People with ALS Served
Care Services Successes
ALS United of Georgia continued to offer critically-needed information, support, and resources to help with the daily challenges of living with ALS. Over 592 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. We approved $217,000 in financial assistance grants to families living with ALS.
203
Chapter Grants Approved
4,815
In-Home Care Hours Provided
The Sally Panfel In-Home Care & Respite Program
ALS United of Georgia'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
ALS United of Georgia's Transportation program provides access to non-emergency transportation, accessible van rentals, van adaptations and more. In 2023, we provided 90 non-emergency trips to clinic & medical appointments and 36 accessible-van rentals to ALS families.
126
Trips Provided
Advocacy
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.
16,000
Messages Delivered to Policymakers Nationwide
Where Are Your Donations Going?
.74 Cents of Every Dollar Raised Goes to Our Programs
858
Support Group Participants
108
In-Person and Virtual Support Groups offered throughout the state of Georgia
426
Patients received care and clinical management of ALS through one of our 3 multidisciplinary centers
35
Pieces of equipment loaned through the Ricky P. Sweat Equipment Loan & Assistive Technology Program
12
Educational webinars provided with expert speakers on a variety of topics
169
Newly diagnosed individuals with ALS provided with consultation and information resources