April 2021

Spotlight On...

Thank you for making a difference for the ALS community

Thanks to your support, we have served more people affected by ALS, increased public awareness about this terrible disease, and advanced promising new ALS research. As we begin this new year, we are proud to share some of the remarkable progress and significant achievements that we have accomplished together in our Year in Review.

The Golden West Chapter promotes a system of multidisciplinary care that helps people live longer and better with ALS, while also driving cutting-edge research and important public policy initiatives to benefit the ALS community. As the number of people with ALS served by the Chapter continues to increase, the demand for our services does as well.

As we look to the future, it is our goal to continue to improve access to services, expand and enhance programs, and to ensure that no one is alone with ALS. Your continued support fuels our capacity to meet the needs of the ALS community and advances the search for effective treatments and cures for ALS.

On behalf of the Board of Directors, staff, and those we serve, we are grateful for your ongoing commitment to the ALS community, and look forward to our collaborative efforts in 2023!

It is only together that we will defeat ALS.

Golden West Chapter Updates & Upcoming Events

Stay Connected with the Golden West Chapter!

Each month, please be sure to check our NEW online calendar for upcoming activities and events, including our online support groups. It's the best way to be "in-the-know" with all the latest and greatest information about what is happening with the Golden West Chapter!

THIS MONTH: We invite you to join us for Champions for Cures and Care on Friday 1/20! This elegant annual event celebrates extraordinary individuals and organizations whose contributions and efforts advance the Chapter's mission-critical activities with the presentation of the Chapter's highest honors, The Essey Awards. Guests will enjoy a festive evening with cocktails and wine tasting; a silent and live auction with our auctioneer Liam Mayclem, KCBS Foodie Chap; gourmet dinner; and celebrity guests. Attendees will revel with the lively music of Carlos Calvo and Friends, with special guest, Adam Chester.

Also, please join us for our ASK ME: ALS Research and Care webinar on Tuesday 1/31 with Clive Svendsen, PhD, Director, Cedars-Sinai Regenerative Medicine Institute and Chair, California ALS Research Network and Catherine Lomen-Hoerth, MD, PhD, Clinic Director of ALS Treatment and Research Center, and Richard K. Olney, Endowed Professor of Neurology at UCSF. Attendees can learn more about the outcomes from our 13th Annual California ALS Research Summit and the impact on ALS care and research in 2023.

In The News

Be sure to visit the News and Stories section of our website, which serves as a valuable resource for timely updates about ALS, our community, and the Golden West Chapter.

This month's headlines:

• CoinGeek: The Running Bitcoin Challenge in Hal Finney’s memory is on again

• Technical Ripon: Wife of Hal Finney announces Bitcoin charity event

• The Golden West Chapter: Honoring the annual MLK Day of Service

• PR Newswire: BrainStorm Cell Therapeutics Partners to Provide Public Access to Biospecimens from NurOwn's Phase 3 ALS Study

• Cytokinetics: Presents Data at the Virtual 33rd International Symposium on ALS/MND

Many Ways to Give

The Golden West Chapter offers many online support group meetings. Experience all of the benefits of attending an in-person support group from the comfort of your home. Please visit our NEW Golden West Chapter's online calendar for monthly updates, such as guest speakers, new meetings and date changes. Find out more about how it works, and please update any browser bookmarks you may have saved!

All are Welcome -- It’s Movie Night!

It’s a new year, and there are new ways that you can support the fight to defeat ALS! Our Golden West Chapter’s Endurance Events provide ongoing opportunities to combine your passion for physical challenges and your commitment to finding cures for ALS. We welcome people of all levels of athletic ability. Start 2023 right, and sign up to cycle, run, or create your own athletic fundraising activity with friends, family, and colleagues.

ASK ME Webinar - Estate Planning and ALS

Did you know you can support the ALS community when you shop for groceries? Before you place your next order or run to the store, sign up for Kroger’s Community Rewards Program. Kroger will donate a portion of your purchases to the Golden West Chapter at no cost to you!

Login to your Ralphs or City Market account, search for “Golden West Chapter” or “RP593,” and hit save. Questions? Please contact Linda Gonzales, Donor Relations Specialist, at lgonzales@alsagoldenwest.org.

In a study funded in part by The ALS Association’s TREAT ALS program, researchers from Northwestern University have identified the first compound (NU-9) that eliminates the ongoing degeneration of diseased upper motor neurons, a key contributor to ALS. While this news is exciting, this study has only tested the compound in mice and in laboratory neurons and is in the very early stages.

People living with ALS will likely experience complications related to the disease that warrant a visit to the hospital at some point in their journey. At the same time, they are not immune from other injuries or medical issues—people with ALS can still get sick or possibly hurt themselves in ways unrelated to the disease. Making the conscious choice to be prepared can make all the difference.

There have been studies that have shown that in people living with ALS, Tregs are reduced and the lower the Tregs, the faster the progression of ALS. In this article, Dr. Kuldip Dave, vice president of research at The ALS Association, discusses the science of Tregs.

The ALS Association is now accepting applications for The Jane Calmes ALS Scholarship Fund for the upcoming 2021-2022 school year. Established in 2019, the scholarship is designed to support post-high school education for students whose lives have been impacted by ALS, with recipients receiving up to $5,000 per year to help cover the cost of education.

Podcast Episodes

A New Season Begins in Baseball’s Longstanding Commitment to Fighting ALS
Recorded on April 1, 2021

Your hosts Mike and Jeremy are joined by Chuck Haberstroh and Adam Wilson, co-chairs of the committee who led the fight to create Lou Gehrig Day.

Gearing Up for Another Big Year in ALS Advocacy
Recorded on March 25, 2021

Your hosts Mike and Jeremy welcome back Ashley Smith, The ALS Association's Associate Director of Grassroots Advocacy, for an overview of 2021 legislative and appropriation priorities.

Focusing on the Best in Patient Care in Hospital and Clinic Settings
Recorded on March 18, 2021

Mike and Jeremy recognize Patient Safety Awareness Week with Leslie Ryan and welcome Lauren Brown in celebration of Certified Nurse’s Day.

Maintaining Good Nutrition With ALS
Recorded on March 11, 2021

Mike and Jeremy are joined by Megan Frisk, a dietician and the care services coordinator at The ALS Association Rocky Mountain Chapter, to serve up some helpful tips on maintaining good nutrition while living with ALS.

Learning Opportunities

ALS Drug Development Webinar Series Part 1: Scientific Considerations
Wed, Apr 7, 2021
12:00 p.m. EST

Communication Options for People With ALS
Mon, Apr 19, 2021
2:00 p.m. EST