Golden West Chapter's November 2022 E-Newsletter
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!
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.
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 firstname.lastname@example.org or 661-364-1913, or Kathleen Kelsey, RCP at email@example.com or 818-292-4315 for information on how to participate using Zoom.
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 firstname.lastname@example.org.
*To minimize the risk of COVID-19, we ask that attendees follow these guidelines.
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 AmazonSmile.com, 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!
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 email@example.com for more information about how to participate.
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 AmazonSmile.com 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!
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 firstname.lastname@example.org or Shannan Sonnicksen, LCSW, MPH, at email@example.com for more information about how to participate.
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 firstname.lastname@example.org 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 email@example.com for more information about how to participate.
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 www.abilitycentral.org.
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 firstname.lastname@example.org for more information about how to participate.
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!
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!
January 1-10, 2023: RUNNING BITCOIN CHALLENGE
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!
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:
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 email@example.com 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 firstname.lastname@example.org.
We look forward to celebrating our ALS Champions with you on Friday, January 20, 2023!
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.
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 email@example.com today.
ANYTIME, ANYWHERE: Run 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 RunALS.org 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 firstname.lastname@example.org today.
Thank you to everyone who joined us for our ASK ME webinar, “ALS from the Caregiver’s Perspective,” with panelists Mari Fuentes, who cared for her husband, filmmaker Anton Maillie, and Trish Rice, who cared for her son, writer and poet Ryan Farnsworth. We are grateful to both Mari and Trish, who continue to honor their loved ones by supporting our mission and the ALS community. In case you missed it, watch it here.
As we close National Family Caregivers Month, the Golden West Chapter thanks all of the donors who support our programs and services designed to benefit family caregivers – we appreciate you! We are especially grateful to Sara Malone, Yeoryios Apallas and the William and Inez Mabie Family Foundation for their generous commitment to establish and sustain The Ron Malone Care Services Fund. This important and meaningful tribute fund was inspired in part by the recognition that ALS cannot be effectively navigated alone, and that family caregivers of all ages are essential in providing proactive care and creating positive outcomes for loved ones diagnosed with ALS. To learn more about the many ways caregivers are supported by the Chapter, please visit our website!
A special thanks to everyone who joined us for the Greater Los Angeles Walk to Defeat ALS on Saturday, November 6. It was a wonderful day to celebrate our ALS community in person again—see the photos!
Many Ways to Give!
It’s not too late to make your tax deductible donation! Support the Golden West Chapter with a year end gift from your IRA. If you or someone you know is 70½ or older, a gift from an IRA can reduce taxable income and satisfy the required minimum distribution. Just instruct your retirement account custodian to send any amount (up to $100,000) to The ALS Association Golden West Chapter. The Chapter is a qualified tax exempt charity, so there is no tax paid on the transfer. Questions? Please contact our Director of Development, Emily Stork, at email@example.com or 818-865-8067 x236.
The holiday shopping season is here! Amazon Smile offers the opportunity to support the Golden West Chapter while you shop online. Simply log onto smile.amazon.com or download the Amazon app and turn on the Amazon Smile option in your settings. Search “ALS Golden West” under charitable giving options and select – ALS Association Golden West Chapter. Amazon will donate a portion of your purchases to the Chapter throughout the year in support of our mission-critical activities.
The ALS Association Golden West Chapter proudly partners with the Combined Federal Campaign (CFC) for federal employees and members of the military. The Golden West Chapter is participating in the 2022 Fall CFC campaign from 9/1/2022 through 1/23/2023 and our Chapter’s code is 97136. Thank you to those who serve and those who support the Golden West Chapter through your generous workplace giving. Questions? Contact Donor Relations Specialist, Linda Gonzales Linda Gonzales at firstname.lastname@example.org.
Comprehensive multidisciplinary care is proven to help people live longer and better with ALS, and is key to finding effective treatments and cures. Our multidisciplinary model brings together a team of clinicians trained to help those affected by ALS during a single visit, typically scheduled on a quarterly basis.The Golden West Chapter collaborates with 28 centers and clinics throughout our service area to help ensure that people living with ALS have access to specialized clinical care. In addition, some clinics may offer opportunities for people living with ALS to participate in research and clinical trials. To see our list of affiliated certified centers and clinics, please visit our website.
Our community partners at Google’s AI for Social Good program are committed to help people whose communication abilities are impacted by ALS. Through Project Euphonia, Google engineers utilize machine-learning technology to help computers understand diverse speech patterns. If you are a person with ALS who has difficulty speaking and/or dysarthria, you can help accelerate this important research by signing up for the voice data collection program. To sign up or for more information, click here.
Did you know that The ALS Association Golden West Chapter offers professional Care Management services, free-of-charge, to help provide expert advice and assistance for people living with ALS and their families? Please watch this video to hear more from some of our care managers and visit our website to learn how to access services.
The Golden West Chapter is pleased to continue our partnership with our longtime community supporters, Superior Mobility and NuMotion, that help facilitate our equipment loan programs for families facing ALS living in California. Through this program, individuals can access safe, functional, appropriate durable medical equipment (DME) and complex rehab technologies (CRT) that promote safety and mobility. Please inquire directly with your Care Manager if you have a need for this type of equipment, or if you have any equipment to donate, including Hoyer lifts, power wheelchairs, or communication devices.
The Golden West Chapter received a generous grant from MasterClass making it possible for the Chapter to invite individuals and families living with ALS to enjoy a free one year subscription! Whether it is learning more about cooking, hearing from a favorite celebrity, or taking a topic specific class, there is something for everyone! To view the offerings, please visit MasterClass Online Classes. To access your complimentary subscription, please email Yesenia Martinez, Operations Administrative Assistant, at email@example.com. (Limit one subscription per family/household).
CLINICAL TRIAL RECRUITMENT ANNOUNCEMENT*
*For recruitment purposes only. DNL343 is an investigational drug and is not approved by any Health Authority. The Golden West Chapter does not endorse one clinical trial or investigational medication over another.
Little is known about the causes of ALS, but you can make a difference in ALS research. The National ALS Registry is designed to contribute to better understanding ALS as we seek to prevent, treat, and cure this disease. Learn more.
Take a tour of our research section to learn more about the scientific projects we fund and upcoming clinical trials.
Your Voice Counts! Become an ALS advocate, and you too can help shape laws and policies that affect thousands of persons with ALS and their families!
Federal funding for ALS research must be expanded exponentially to provide new treatment options to cure and prevent ALS. Each year, Congress makes critical decisions about the future of ALS research through the annual appropriations process. Contact your member of Congress TODAY urging them to support increased investments in ALS research.
Learn about our 2022 public policy priorities as we continue to serve, advocate for, and empower people affected by #ALS. Find out more.