Our Impact in 2021
People with ALS Served
Care Services Successes
As we look back on 2021, ALS Association - Orange County continued the hybrid programs and services that fit our patient community during the pandemic while also exploring opportunities to expand. Not only did our programmatic options increase, with continued hybrid support group meetings and trainings, but our team continued working around the clock through virtual platforms to keep the lines of communication open. We provided continuity of care to 1,133 people with ALS through ongoing virtual support, equipment training, multidisciplinary treatment options, and respite care grants.
Virtual Education Summit
Education Summit Participants
Pieces of Equipment Delivered
We partnered with vendors to deliver close to 400 pieces of Durable Medical Equipment and Assistive Communication Equipment. The Orange County Chapter is proud to support a multidisciplinary ALS Clinic, in collaboration with the UCI. Together with our clinic partners and dedicated Care Services staff, we work to meet the needs of the entire ALS community.
Invested in ALS Research
Will be invested over 5 years for ALS research
While the pandemic continued throughout 2021, your advocacy for those living with ALS produced some incredible wins, both on the federal and state level. Accelerating Access to Critical Therapies for ALS Act - Thanks to the incredible advocacy of the ALS community, the Accelerating Access to Critical Therapies (ACT) for ALS Act passed Congress and was signed into law by President Biden on December 23, 2021. This act authorizes $100M over five years for ALS research and creates the first federal entity explicitly charged with developing treatments for neurodegenerative diseases. Specifically, the bill would create a new:
- Framework for delivering experimental therapies to people with ALS
- Research grant program at the FDA for rare neurodegenerative diseases
- Collaborative for Rare Neurodegenerative Diseases at the Department of Health and Human
Services (HHS) to coordinate federal efforts on developing and approving treatments and cures.
Where Are Your Donations Going?
.82 Cents of Every Dollar Raised Goes to Our Programs
People attended 136 support groups
Active research projects worldwide
Patients received care and clinical management of ALS through one of our 10 multidisciplinary centers
Virtual home visits
in monetary grants to cover 2,400 hours of in-home health care and additional expenses such as prescription co-pays, and more
Rides provided free of cost for patients to attend appointments at Chapter multidisciplinary clinics