May 2020
ALS Emergency Relief Fund
Learn more about how we're adapting our
services to meet the needs of people living
with ALS during the COVID - 19 crisis.
We are humbled by the Greater Sacramento region's overwhelming support during the Big Day of Giving. Our community raised almost $75,000 in support of ALS families as they navigate the COVID-19 crisis. Thank you to everyone who contributed and who continues to stand by our vision of creating a world without ALS! We are stronger because we're #ALSInThisTogether.
ALS Awareness Month: How our fight continues

May marks ALS Awareness Month. Of course, this year is different than past years as the world has changed significantly in the face of a global pandemic. However, ALS doesn’t stop and neither will we. During the month of May we have a full calendar to increase awareness of ALS and of the severe physical, emotional, and financial burdens it creates for people living with the disease and their families. We’ll be talking about the disease and its burdens in the context of the COVID-19 public health crisis, which exacerbates the difficulties people living with ALS already face in number.
2020 National ALS Advocacy Conference Goes Virtual
The ALS Association’s top priority during this uncertain time is the health and safety of people with ALS and their caregivers, volunteers and our staff – as well as the greater community good. We want to do everything we can to ensure you receive the medical assistance and guidance you need, while continuing to drive action to increase funding for research, accelerate the search for treatments and improving access to care.

As part of these efforts, we are pleased to announce that nation’s largest gathering of ALS advocates is going virtual! Held from May 26 through June 3, the 2020 National ALS Virtual Advocacy Conference will bring together ALS advocates from across the country to learn about the latest in ALS research, care services and advocacy and engage with Congress on policy priorities that will improve the lives of people with ALS.
For a complete overview of the 2020 National ALS Virtual Advocacy Conference, please visit www.alsadvocacyconf.org.

While Congressional offices are currently closed to visitors, legislators are still hard at work. This represents an incredibly valuable opportunity to continue our ongoing virtual advocacy to advance our policy priorities on Capitol Hill.

There is no fee to participate but registration is required.
Noninvasive Ventilators Removed from Competitive Bidding in Big Win for ALS Community

The Medicare program at the Centers for Medicare & Medicaid Services  removed  noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.

Support Group Meetings for pALS and cALS, as well as our Transitions Group, are currently offered in an online video format.

Zoom is a live video platform that offers all of our communities the opportunity to connect with each other across 24 Northern California Counties, from the safety of your own homes.
The ALS Association Continues to Push Development of Novel Treatments

The ALS Association is excited to announce $2.5 million in grants to help develop promising new treatments for people living with ALS. 

The grants are supported by the Association’s Lawrence and Isabel Barnett Drug Development Program, which supports drug discovery research in both academia and industry to develop new drug therapies and test them in a preclinical setting while moving those therapies closer to clinical use.
Occupational Therapy and ALS: How It Can Work in the Telehealth World

Social distancing and stay-at-home orders in response to the COVID-19 pandemic are upending many facets of daily life. In recognition of Occupational Therapy Month, we checked in on ways this critical piece of multidisciplinary care can continue during quarantine and innovative ways telehealth can be adopted by occupational therapists.
ALS Association Presses Congress to Expand Access to Health Care as Part of COVID-19 Response

The ALS Association joined with 32 consumer and patient advocacy organizations in calling on Congress to enact legislation in response to the COVID-19 pandemic that protects and expands access to quality, affordable health insurance

Tips to Help the ALS Community Plan Ahead During the COVID-19 Pandemic

As the COVID-19 pandemic spreads throughout the country, the Centers for Disease Control and Prevention  recommends   putting together plans for your household and community. The ALS Association has resources available to help our community put together plans tailored around the needs of people living with ALS.  

Frequently Asked Questions
The ALS Association has compiled a list of Frequently Asked Questions about living with ALS and the potential risks of contracting COVID-19. Click here to read responses from our professional medical and care services team.
In memoriam: Remembering Dick Essey
The ALS Association mourns the passing and celebrates the life and legacy of Richard P. “Dick” Essey, who died recently at his home in San Francisco.

Dick was a successful businessman, a loving husband to his wife of 50 years, Sheila, and a devoted father and grandfather. He was also an extraordinary hero in the fight against ALS. 
“You’ve Got to Keep Going and Fight and Just Not Give Up”: Lesley Krummel on Living with ALS

Like most grandparents, Lesley Krummel took great joy in picking up her grandkids. And that loss is one of the most challenging aspects of her ALS progression.
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Thank you to our local sponsors!