2020 was a year unlike any other. However, in the face of every obstacle, our community persisted in fulfilling our commitment to ALS families, knowing that "ALS doesn't stop, and neither do we."
Your efforts over the past year, whether you walked, donated, volunteered, advocated, or spread awareness in your own unique way, have made an incredible impact on families living with ALS. Take a look back at all we've accomplished together and read more about how we're collectively working toward our vision of a world without ALS in our Annual Impact Report.
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“Every day has its challenges. Some days are more emotional than others, but good moments are tucked inside each day and we are raising our son together. With the help and support of many, we are living with ALS.” - Janetta Michelsen: wife, mother, and ALS caregiver. |
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ALS Disability Insurance Access Act Becomes Law
The ALS Disability Insurance Access Act went into law 12/22. This is a victory for ALS advocates who have worked for four long years to end the SSDI 5-month waiting period for people living with ALS. The Social Security Administration must now write rules for how the law will be implemented before the 5-month waiting period is eliminated. We are pushing them to work as quickly as possible to enable SSDI applicants with ALS to receive benefits immediately.
Increased ALS Research Appropriations
DOD ALSRP: Funding for the Department of Defense ALS Research Program doubled from $20 million to $40 million. Last year, funding for this program was doubled from $10 to $20 million. This dramatic increase in funding over the past two years is the result of The ALS Association’s commitment to boosting research funding and the hard work of Chapters and ALS advocates.
NIH: The FY2021 omnibus appropriations bill increased National Institutes of Health funding to $42.934 billion, a $1.250 billion increase (+3%) over the comparable FY2020 level. NIH has increased research funding dramatically over the last several years from $52 million in FY2016 to estimated spending of $111 million for 2020 (click here for more details). We expect that this increase in NIH funding will again boost funding for ALS research.
ALS Registry and Biorepository: Congress has maintained funding of $10 million in FY2021 for the National ALS Registry at the CDC.
American Airlines Reverses Course on Weight Guidelines
In response to advocacy by The ALS Association, Paralyzed Veterans of America, MDA and partners from across the disability and mobility communities, American Airlines announced that it has repealed its conservative weight guidelines and replaced them with FAA-approved guidelines that are more accommodating of mobility devices, such as power wheelchairs.
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COVID-19 Vaccine Information for People with ALS
Distribution of the Pfizer and Moderna COVID-19 vaccines has begun across the country. As the situation unfolds, we will continue to follow developments and ensure that timely, relevant data is available for the ALS community for informed conversations and decision-making around the vaccine. Recently we launched a COVID-19 vaccine informational landing page that will be updated regularly as new resources and information become available.
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COVID-19 Vaccines Update: FDA and CDC Leaders Address the Rare Disease Community on Upcoming Webinar
The ALS Association, in collaboration with The National Organization for Rare Disorders (NORD), Cystic Fibrosis Foundation and Muscular Dystrophy Association, is hosting a special COVID-19 Vaccine Update webinar on January 15, 2021, at 11 a.m. PST. The webinar, intended for patients, caregivers, advocates and the general public, will address COVID-19 vaccine authorizations and upcoming vaccine candidates, along with other special considerations for rare disease patients. Speakers include Dr. Stephen Hahn, Commissioner of Food and Drugs, FDA, and Dr. Peter Marks, Director, Center for Biologics Evaluation and Research, FDA.
For those unable to attend, the webinar will be recorded and a viewing link sent to all registrants for on-demand viewing. Register here: https://bit.ly/Vaccine-Webinar
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COVID-19 Assistance Fund Launched
The Patient Advocate Foundation Co-Pay Relief program has launched a COVID-19 assistance fund. Patients with a COVID-19 diagnosis are eligible to receive up to $500 to cover the costs of co-payments and deductibles. Learn more here.
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Upcoming and Archived Care Services Webinars at Your Fingertips
Each month, the association hosts webinars featuring experts in the ALS community, care service updates, technology for families impacted by ALS, and more. Check out upcoming and past Care Service webinars by visiting this link,
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Select Respiratory Services is a respiratory service organization that is locally owned and operated by California licensed respiratory care practitioners. We provide cardiopulmonary care and case management services to people in their homes, as well as in clinics, skilled nursing facilities, care homes, and assisted living facilities.
Select Respiratory Services has partnered with The ALS Association Greater Sacramento Chapter to manage and store gently used respiratory equipment and unopened supplies that are donated by people living with ALS and their loved ones. When anyone with ALS has a need for respiratory equipment that is not covered by their medical insurance, a respiratory therapist from Select Respiratory Services will deliver the equipment and supplies at little or no charge.
For more information, please contact The ALS Association Greater Sacramento Chapter at 916-979-9265 or Select Respiratory Services at 916-805-5119.
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