August 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.
2020 Walk to Defeat ALS®
The Greater Sacramento Walk to Defeat ALS sets the standard for community, hope, and the celebration of ALS heroes. It also is the #1 source of funds for everything we do as a Chapter, from equipment loans and multidisciplinary clinical care to speech devices and care consultations. Without your support, we cannot continue to serve over 600 people living with ALS in Northern California.

This year, we need you now more than ever. Funds raised through the 2020 Walk to Defeat ALS will directly support the Chapter's Emergency Relief Fund, which provides a lifeline to people with ALS and their families during the COVID-19 crisis and beyond. Through this fund, we are able to address urgent supply needs, help families prepare for the unexpected, and maintain access to critical care programs.

Please register today and provide hope for tomorrow. We're offering TWO ways to Walk this year--a socially-distanced Car Cruise on October 3rd OR a Walk Your Way option, which brings the Walk to your neighborhood. No matter which option is right for you, we'll be there to support you every step of the way.
Expand Telehealth Access Permanently
Telehealth provides a safe and effective way for people living with #ALS to receive care from medical providers. That’s why this week, we’re joining the American Academy of Neurology (AAN) and other patient advocacy organizations to speak up for telehealth.

Take action to protect this critical health care lifeline by urging your members of Congress to pass legislation that supports permanent access to telehealth.
Have you thought about your IRA recently?

Nonprofit organizations like our Chapter need support now more than ever. Did you know there are other ways to make a real impact for those living with ALS other than simply writing a check? An IRA charitable rollover might be a good fit for you!

If you're 70.5 or older, a Qualified Charitable Distribution (QCD) allows you to make direct distributions of up to $100,000 per year to the Greater Sacramento Chapter without having to count the distributions as income for federal income tax purposes. No charitable deductions may be taken, but distributions to the Chapter will qualify for all or part of your required minimum distribution. This could help you avoid a higher tax bracket that might otherwise result from adding a required minimum distribution to your income.

If a gift from your IRA sounds like it might be a good fit for you, we encourage you to speak with your IRA administrator today.
HEALEY ALS Platform Trial Enrolls First Participants

The first participants have been enrolled in the HEALEY ALS Platform Trial at Massachusetts General Hospital, testing three proposed drug regimens: Zilucoplan, Verdiperstat, and CNM-Au8 nanocrystalline gold. Read the full release from The Sean M. Healey & AMG Center for ALS Research at Mass General here.
Biogen Announces Latest Updates on ALS Clinical Trials During the Pandemic

While social distancing has created challenges to conducting clinical trials during the COVID-19 pandemic, the ALS community can’t wait- and won’t wait – until the pandemic is over to find treatments and a cure.

In a recent statement, Biogen emphasized the sense of urgency that drives its work.
ALS Caregiver Education Expands with Virtual Instruction

Social distancing measures put in place in response to the COVID-19 pandemic created a unique dilemma for Amber Stalker. Stalker is director of care services for The ALS Association Northern New England Chapter, which runs a regular training seminar to teach caregivers how to use critical assistive living devices that enhance the quality of life for their loved ones living with ALS. Throughout the spring and summer, quarantine rules made it impossible to meet her caregivers and trainers in person.
Researcher Spotlight: Zhe Zhang, Ph.D.

Sun Lab at the Johns Hopkins School of Medicine

Project: Understanding repeat RNA transport and RAN translation in C9ORF72-ALS/FTD

Mentor: Shuying Sun, Ph.D.
Researcher Spotlight: Lauren Laboissonniere, Ph.D.

Ranum Lab at the University of Florida

Project: Development of novel therapeutics for the treatment of C9orf72 ALS/FTD

Mentor: Laura P.W. Ranum, Ph.D.
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.
Thank you to our national sponsors!
Thank you to our local sponsors!