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Golden West Chapter's November 2022 E-Newsletter

Spotlight On

YOU... and our gratitude for your support of the ALS community

These incredible pictures of special moments tell the story of your commitment to our mission - to discover treatments and cures for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

Throughout the year, you have enthusiastically participated in our programs and community outreach events, sharing your motivation and engaging others to get involved in support of our ALS community. Inspired to take action, you have joined us, in person and online, to learn, celebrate milestones, and stay connected in support and solidarity with people living with ALS and their loved ones.

We are stronger together, and you are each making a difference in advancing the search for effective treatments and cures for ALS. Some of the highlights of 2022 have included:

Your dedicated efforts - along with the generosity of our donors, sponsors, and supporters - have made an incredible impact. Together, we are committed to meeting the diverse needs of the ALS community, to accelerating scientific discovery, to advancing public policy initiatives, and to ensuring that no one is alone when facing this disease.

On behalf of the Golden West Chapter’s Board of Directors, and staff, we thank you for your steadfast, generous, ongoing support of our efforts in service of nearly 2000 families facing ALS throughout 31 California counties and the entire state of Hawaii.

It is only together that we will defeat ALS.


Golden West Chapter Updates & Upcoming Events

Each month, please be sure to read our overview of recent news, important updates, and upcoming activities. It's the best way to stay connected and be "in-the-know" with all the latest and greatest information from the Golden West Chapter!

NEXT UP: This December, please check our calendar for upcoming events and online support groups, and save the date for our Running Bitcoin Challenge, Champions for Cures and Care, and our next ASK ME: "ALS Research and Care" webinar in January 2023!


This Month

We are HERE to support YOU: Online Support Group Meetings

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 own home. Please visit our Chapter's online calendar for monthly updates, such as guest speakers, new meetings and date changes.

Mark Your Calendar

Tuesday, December 13: *Special Holiday ALS Support Group Meeting*

You're invited to join us on Tuesday, December 13 at 1:30pm PST / 11:30am HST as we combine the regularly scheduled All-Chapter ALS Online Support Group, Trach and Vent ALS Online Support Group, and Turlock/Central Valley ALS Online Support Group together on this day for a shared a holiday zoom meeting with ugly sweaters, e-card exchange, and more! Please contact Care Managers Robin Eller, RCP at or 661-364-1913, or Kathleen Kelsey, RCP at or 818-292-4315 for information on how to participate using Zoom.

Learn More

Tuesday, December 13: Annual ALS Holiday Party

ALS Ohana, the ALS Foundation of Hawaii, and The ALS Association Golden West Chapter are excited to announce our annual ALS Holiday Party is BACK next Tuesday, December 13th from 5:00 PM HST-8:00 PM HST at Central Seventh Day Adventist Church (2313 Nuuanu Ave. Honolulu, HI 96817). Food will be provided, but please bring a dessert to share! To RSVP, please contact Annmarie Ingham, Assistant Director, Community Outreach-Hawaii, at

*To minimize the risk of COVID-19, we ask that attendees follow these guidelines.

Learn More

Just in Time for the Holidays: Give While You Shop!


This holiday season, give back while making gift purchases online at Amazon. If you use the link, they will donate 0.5% of the price of your eligible purchases to the charitable organization of your choice. Just select “Golden West Chapter” to give back with your everyday and holiday purchases!

Learn More

Tuesday, December 20: LGBTQIA+ ALS Online Support Group

Join us for our next LGBTQIA+ ALS Online Support Group on Tuesday, December 20 at 1:00 PM PST/11:00 AM HST. All LGBTQIA+ people living with ALS and their family, friends, loved ones, and allies are welcome to attend this meeting. Please contact Daniel Potapshyn, Support Group Facilitator at for more information about how to participate.

Learn More

Need last minute gifts? Check out our Read to Defeat ALS page!

Now you can read a good book while supporting the ALS community. Explore the authors who have shared their stories in support of the ALS community and the Golden West Chapter! Be sure to purchase the books through and select “The ALS Association Golden West Chapter” as the charity of your choice, for an additional donation of 0.5% of eligible purchases to the Chapter!

Buy a Book and support the ALS Community

Tuesday, December 20: Living with ALS Under 50 Online Support Group

Join us for our next Living with ALS Under 50 Online Support Group on Tuesday, December 20 at 4:00 PM PST/2:00 PM HST. Please contact Emma Karavardanyan, M.A. at or Shannan Sonnicksen, LCSW, MPH, at for more information about how to participate.

Learn More

Wednesday, December 21: Español/Spanish Language ALS Online Support Group

Lo invitamos a unirse al grupo de Apoyo en Español. Cuándo: Miércoles, 21 de Diciembre 2022 04:00 p.m. Hora del pacífico/01:00 p.m. Hora de Hawaii. Por favor, comunicarse por correo electrónico a Debbie Joy para las instrucciones.

Please join us on Wednesday, December 21 at 4:00 PM PDT/1:00 PM HST for our Spanish Language ALS Online Support Group. Contact Care Manager, Debbie Joy, at for more information about how to participate.  

Learn More

NEW RESOURCE: Access Information About ALS

The Golden West Chapter is pleased to share a venture launched by one of our long-time partners. Ability Central’s new website provides information and resources to the more than 61 million Americans who are deaf, disabled, or neurodiverse. The Ability Central Portal offers a wide range of support, including vision, hearing, mobility, and cognitive needs. It also includes unique databases and custom-built resources to meet the needs of people with disabilities including people living with ALS. These tools include a device finder, service locator, event database, and resource library.

Providing opportunities for education and collaboration, the portal uses input and feedback from site visitors to update and expand its information. Visitors can comment, add reviews or feedback, and anyone can submit new content for the portal. Access the Ability Central Portal at

Learn More

Wednesday, December 28 All-Hawaii ALS Online Support Group

Join us for our next All-Hawaii ALS Online Support Group on Wednesday, December 28 at 6:00 PM PST/4:00 PM HST. Please contact Care Manager, Rex Like, MA, at for more information about how to participate. 

Learn More

11:59 PM on Thursday, December 31: Time is running out to make your gift!

This is the last day to make a tax-deductible donation in 2022 to the Golden West Chapter to support our goals in research, care services, and public policy that benefit the ALS community. You can also give in support of our 2022 Walks to Defeat ALS or register for our 2023 Rides to Defeat ALS. End the year strong by making a gift and helping us fight against ALS!

Make Your Gift Today

Subscribe to our Calendar: Golden West Chapter Activities and Events

Did you know that you can subscribe to our online calendar that lists all of our Chapter activities and events? It’s an easy way to stay connected and get involved with the ALS community. Find out more by pressing the “subscribe” link at the top of the calendar, or just select the activities and events that interest you most and save them to your personal calendar!

Visit Our Calendar

Next Month!


Join Honorary Chair Fran Finney and the Running Bitcoin Challenge Committee as we honor legendary cypher punk, Hal Finney. This is THE EVENT that combines Hal Finney's love of running and Bitcoin and is raising funds and awareness to help defeat the hideous disease, ALS, that claimed his life. For this worldwide do-it-yourself activity, you are challenged to run (or walk, roll, or hike) the equivalent of a half marathon -- cumulatively or all at once -- by the end of January 10, 2023!

Learn More

Friday, January 20, 2023: Champions for Cures and Care

The Golden West Chapter’s Champions for Cures and Care will take place on Friday, January 20, 2023 at the Hyatt Regency San Francisco Airport in Burlingame. Our annual event celebrates individuals and organizations whose contributions and efforts advance the Chapter’s mission critical activities.

RSVP today and join us for an elegant and festive evening featuring cocktails and wine tasting, a silent and live auction, gourmet dinner, special guest appearances, entertainment, and the presentation of the Golden West Chapter's highest honors, The Essey Awards. Our esteemed Essey Award honorees include:

  • Commitment to Cures Award: The California ALS Research Network, a group of global leaders who, in partnership with the Golden West Chapter, are accelerating discovery, promoting collaboration, and achieving breakthroughs in the search for effective treatments and cures for ALS. These esteemed researchers, clinicians, and ALS advocates volunteer their time in planning the annual California ALS Research Summit.

  • Dean and Kathleen Rasmussen Advocate of the Year: Jeremy Merz, an extraordinary heathcare lobbyist who is living with ALS and who has been instrumental in securing new state funding to benefit the ALS community.

The Golden West Chapter is proud to recognize and honor champions for our cause - including you. Our collective efforts to defeat ALS, every day in many ways, bring vital help and hope to the ALS community!

Sponsorship and ticket purchase opportunities are now available. Please contact Asher Garfinkel, Vice President of Community Outreach at for more information.

If you are interested in reserving a hotel room at the Hyatt Regency San Francisco Airport in Burlingame, please email Katey Randall, Special Events Coordinator, at

We look forward to celebrating our ALS Champions with you on Friday, January 20, 2023!

Learn More

Tuesday, January 31, 2023: ASK ME: ALS Research and Care

We invite you to join us for our ASK ME educational webinar, "ALS Research and Care" to learn about the outcomes from our 13th Annual California ALS Research Summit.

The Summit, created and presented by the Golden West Chapter of The ALS Association, is an annual gathering of researchers, investigators, clinicians, biotech companies, government representatives, and advocates in ALS and related fields in the state of California. Special guest speakers at this ASK ME program will include: 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.

Register Today



Save the Date!

ALL YEAR: Hike to Defeat ALS

Throughout the year, the Hike to Defeat ALS is a do-it-yourself opportunity to trek your favorite trails and raise funds that directly support the Chapter's efforts to find effective treatments and cures for ALS. It is the perfect year-round activity to show your support for the ALS community while enjoying the great outdoors! For questions, send us an email at today.

Hike to Defeat ALS


Our ongoing Run to Defeat ALS "do-it-yourself" program is the perfect opportunity to participate in a local 5k, 10k, fun run, trail run, half marathon, or marathon, AND fundraise in support of the ALS community at the same time! Pick the event you’d like to participate in, then register at to get set up with a personal fundraising page, and we'll help you cross that finish line! For questions, send us an email at today.

Run to Defeat ALS



Special Thanks



Many Ways to Give!


Care Services




2022-06-eNews-Clinical Trials.png

  • Amydis is conducting a Prospective Randomized Open, Blinded Endpoint Study (PROBE) to assess the safety and tolerability of a single intravenous (given through a vein) dose of the investigational retinal tracer AMDX-2011P in people with ALS and Parkinson's disease. The phase one clinical trial is recruiting at two sites in Southern California. To find out if you qualify and for more information about PROBE, please visit Reimbursement for travel and lodging for out of area participants is provided, in addition to a stipend.

  • Cytokinetics is hosting the COURAGE-ALS study, which is currently recruiting participants to evaluate the efficacy and safety of an investigational drug, reldesemtiv, for amyotrophic lateral sclerosis (ALS). COURAGE-ALS is a phase 3 placebo-controlled clinical trial with the main goal of learning if taking reldesemtiv will slow the progression of ALS. COURAGE-ALS is recruiting at several study sites in California. For more information about the study and to find out if you qualify, please click here.

  • Are you looking to contribute to SOD1-ALS research? The ATLAS Study, sponsored by Biogen, is now enrolling adults who are carriers of certain SOD1 gene variants. If you think you may be a carrier of a certain SOD1 gene variant (also called a gene mutation) and you do not have signs or symptoms of ALS, the ATLAS Study may offer you the opportunity to contribute to SOD1-ALS research. Those who qualify will receive all study-related treatments and assessments, including genetic testing and counseling, at no cost. Reimbursement for study-related travel is available. For more information, please visit