Golden West Chapter's January 2022 E-Newsletter

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 with you some of the remarkable progress and significant achievements that we have accomplished together in our Year in Review.

The Golden West Chapter promotes a proactive and robust 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 2022!

It is only together that we will defeat ALS.

Fred Fisher, MSW, LCSW
President & CEO
The ALS Association Golden West Chapter

Sheri Strahl, MPH, MBA
Chief Operating Officer
The ALS Association Golden West Chapter

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 January, please check our calendar for upcoming events and online support groups, help us surpass our Walk to Defeat ALS fundraising goal, start your training to participate in Tri to Defeat ALS, and be sure to save the date for our next ASK ME educational webinar, "ALS Research and Care in 2022."

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

THIS MONTH: Running Bitcoin to Defeat ALS

Earlier this month, Fran Finney and the cryptocurrency community joined forces to launch the first-ever Running Bitcoin virtual event in memory of Hal Finney, who lost his battle to ALS in 2014. The official event dates were January 1-10, but by popular demand, we are keeping the Running Bitcoin site open until January 31 for those who would still like to run and donate to the exciting new activity. Watch this video to learn more or visit runningbitcoin.us today!

Find Out More

New Year’s Resolution Run!: Run to Defeat ALS

Start January with a New Year’s Resolution Run! Our ongoing Run to Defeat ALS is the perfect opportunity if you are interested in participating in a local 5k, 10k, fun run, trail run, half marathon, or marathon, AND you want to fundraise for 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 run@alsagoldenwest.org today.

Thursday, January 13: Trach and Vent ALS Online Support Group

Please join us for our next Trach and Vent ALS Online Support Group on Thursday, January 13 at 1:30 PM PT/11:30 AM HT. Contact Care Manager, Robin Eller, RCP, at reller@alsagoldenwest.org for more information about how to participate.

Learn More

January 15, 2022: LAST DAY to bid in support of the Walk to Defeat ALS!

Bids close January 15, 2022 on Gift Baskets benefitting our Golden West Chapter Walk to Defeat ALS! Our Golden West Chapter Walk to Defeat ALS is 90% to goal. The time is NOW to place your bid on an auction basket with your favorite items to help fundraise for our ALS community!

Place Your Bid!

Monday, January 17: MLK Day of Service

Join us in celebration of the 27th anniversary of the MLK Day of Service! On this day, we celebrate the legacy of the Nobel prize-winning civil rights leader, Dr. Martin Luther King, Jr., who dedicated his life to others to make a better world for all. The Golden West Chapter is joining in this national day of service which inspires people to give back to the causes that matter to them. There are many ways you can participate. Make it a day on, not a day off, and help us raise awareness and support for the ALS community!

Learn More

Now through Monday, January 17: Early Bird Discount for Napa Valley Ride!

Register TODAY through Monday, January 17 and get $15 off of your registration fee for this year’s Napa Valley Ride to Defeat ALS and Walk! Be a part of the largest ALS fundraising event in the country and join us on Saturday, September 24, 2022 in the beautiful Napa Valley! We offer six different routes for every level of cyclist as well as a short walk. Have questions? Email us at ride@ridetodefeatals.org.

Tuesday, January 18: LGBTQ+ ALS Online Support Group

Join us for our next LGBTQ+ ALS Online Support Group on Tuesday, January 18 at 1:00 PM PT/11:00 AM HT. All LGBTQ+ 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 dpotapshyn@alsagoldenwest.org or Kim Lembo, Director of Community Outreach - Northern California at klembo@alsagoldenwest.org for more information about how to participate.

Learn More

It’s Time to Start Your Training: Tri to Defeat ALS

Start off the New Year right by training for the first ever Tri to Defeat ALS. In honor of Kevin Heller, who passed away in 2021 with ALS, join Team Challenge ALS for the 2022 Lavaman Waikoloa Triathlon (olympic distance). Register today as a Lavaman Triathlete to join us on April 3, 2022 in beautiful Hawaii OR choose your own triathlon and fundraise with Team Challenge ALS when you register (for free) as a General Triathlete! Have questions? Email Kaisha Johnson, Assistant Director of Team Challenge ALS.

Tuesday, January 18: Familial ALS Online Support Group

Join us on Tuesday, January 18 at 2:00 PM PT/12:00 PM HT for our Familial ALS Online Support Group. Please contact Care Manager, Cynthia Marks, RT, at cmarks@alsagoldenwest.org for more information about how to participate.

Learn More

Wednesday, January 19: Español/Spanish Language ALS Online Support Group

Lo invitamos a unirse al grupo de Apoyo en Español. Cuándo: Miércoles, 19 enero 2022 04:00 p.m. Hora del pacífico/02:00 p.m. Hora de Hawaii. Por favor, comunicarse por correo electrónico a Debbie Joy djoy@alsagoldenwest.org para las instrucciones.

Please join us on Wednesday, January 19 at 4:00 PM PT/2:00 PM HT for our Spanish Language ALS Online Support Group. Contact Care Manager, Debbie Joy, at djoy@alsagoldenwest.org for more information about how to participate.

Learn More

January 21 & 22: Charlie Wedemeyer in Polynesian Football Hall of Fame

Former Los Gatos High School Football Coach, Charlie Wedemeyer will be honored as part of the Class of 2021 for the Polynesian Football Hall of Fame during the 2022 Polynesian Football Hall of Fame Enshrinement Weekend on January 21 & 22. Even after Charlie was diagnosed with ALS in 1978, he continued to coach for Los Gatos for 30 years. Charlie and his wife, Lucy first became involved with the Golden West Chapter in 2007 through the Walk to Defeat ALS. After Charlie’s passing in 2010, Lucy remained committed to the fight against ALS and is currently serving as an Advisory Trustee for the Chapter.

Located at the Polynesian Cultural Center (O`ahu), the Polynesian Football Hall of Fame honors Polynesia’s greatest players, coaches and contributors. It was established in 2013 by Super Bowl Champions Jesse Sapolu and Ma`a Tanuvasa.

Learn More

New Year, New Adventures: Hike to Defeat ALS

New Year, New Adventures to be sought! Our Hike to Defeat ALS is an ongoing opportunity to hike your favorite trails while raising funds that directly support the Golden West 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 hike@alsagoldenwest.org today.

Monday, January 24: Veterans with ALS Online Support Group

Join us on Monday, January 24 at 1:00 PM PT/11:00 AM HT for our Veterans with ALS Online Support Group. Contact Care Managers, Robin Eller at reller@alsagoldenwest.org or Kathleen Kelsey at kkelsey@alsagoldenwest.org for more information about how to participate.

Learn More

Ends January 31: Let’s Walk to Defeat ALS across the finish line!

Thank you for your steadfast support of the Golden West Chapter’s Walk to Defeat ALS this year. We are still welcoming donations in support of your local ALS community as we work together to achieve our essential fundraising goal. Our fiscal year ends on January 31, 2022 and so your participant centers for this year’s Walks will remain open! It is not too late to achieve your personal or team goal, or help a special Walker get to their goal! Please stay tuned for a special announcement about 2022 Walk to Defeat ALS dates and details soon. Re-live our 2021 Walk moments and share them with others via our Walk-day playlists at YouTube and Facebook or visit our event festival zone. Make your gift today!

Next Month!

Tuesday, February 1: ASK ME: ALS Research and Care in 2022!

We invite you to join us for our ASK ME educational webinar, "ALS Research and Care in 2022" to learn about the outcomes from our 12th Annual California ALS Research Summit! The Summit, created and presented by the Golden West Chapter, is an annual gathering of researchers, investigators, clinicians, biotech companies, government representatives, and advocates in ALS and related fields in the state of California. Register today!

Saturday, February 5: Charlie Wedemeyer All Star Game

This year’s Charlie Wedemeyer All Star Game will be played at Los Gatos High School on Saturday, February 5, at 6:00 PM PT. The annual All Star Game showcases the very best high school football players from across Santa Clara County and has honored the Golden West Chapter’s very own, Charlie Wedemeyer, since 1984. Though only given a short time to live after being diagnosed with ALS in 1977, Charlie lived with the disease for 32 years as a devoted husband, father, and football coach in Los Gatos.

Please join us in remembering Charlie and honoring the entire Wedemeyer family. All proceeds from the game benefit The ALS Association Golden West Chapter and Coaches Against Cancer. For tickets and more information on coaching staff, rosters, and details please visit: www.santaclaraallstar.com

Save the Date!

Saturday, March 19: Day of Remembrance

Please join us virtually for our Day of Remembrance to honor and remember special friends and loved ones lost to ALS. There is no cost to attend this event however, tribute gifts may be made; these donations support the Golden West Chapter’s mission priorities and provide essential help and hope to the ALS community. For more information, or if you have any questions, please contact Janelle Webb, Family Outreach Specialist, at jwebb@alsagoldenest.org or (818) 635-7187.

Sunday, April 3: Tri to Defeat ALS at 2022 Lavaman Waikoloa Triathlon

This year we are taking on a new challenge to DEFEAT ALS -- the Tri to Defeat ALS! Team Challenge ALS is creating a team for the 2022 Lavaman Waikoloa Triathlon (Olympic distance) and we want YOU to join us. Register today at TritoDefeatALS.org as a Lavaman Triathlete to join us on Sunday, April 3 in beautiful Hawaii OR choose your own triathlon and fundraise with Team Challenge ALS when you register (for free) as a General Triathlete! Have questions? Email Kaisha Johnson, Assistant Director of Team Challenge ALS.

Sunday, April 24: Jim Tracy 5K to Defeat ALS

We are excited to announce that we are coming together IN PERSON for our 8th annual Jim Tracy 5K to Defeat ALS on Sunday, April 24! Join us for a timed 5k run/walk or a shorter walk option in the beautiful Golden Gate Park in San Francisco in memory of University High School’s beloved cross country coach, Jim Tracy. This event is a special gathering of the ALS community and this year is going to be the biggest and best yet! Register today for our lowest registration fee at JimTracy5k.org. Questions? Email us at jt5k@alsagoldenwest.org.

Saturday, May 14: SoCal Ride to Defeat ALS and Hike/Walk

After two years of a virtual-only event, we hope you will join us in the beautiful Conejo Valley in 2022! Our 6th annual SoCal Ride to Defeat ALS and Hike/Walk will feature fully supported routes including support vehicles, and rest stops with snacks and hydration. Cross the finish line filled with inspiration, and enjoy our fantastic festival with live music and delicious food and beverages. It will be a party that you won't want to miss! For questions, send us an email at socalride@ridetodefeatals.org today!

Saturday, September 24: Napa Valley Ride to Defeat ALS and Hike/Walk

After two years of a virtual-only event, we will finally be gathering together in person in the beautiful Napa Valley on Saturday, September 24! This will be a year to remember and we need every single one of you to make it the biggest and best Napa Valley Ride to Defeat ALS and Walk yet! We hope you will join us and provide hope and help to those affected by this devastating disease. Register TODAY through Monday, January 17 and receive $15 off of your registration fee by using code “EARLYBIRD22”! Don’t wait - join the largest ALS fundraising event in the country today! Any questions, email us at ride@ridetodefeatals.org!

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, while raising ALS awareness and supporting Chapter care services and the search for effective treatments and cures for ALS. 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!

Special Thanks

Our thanks to everyone who participated in the Petersen International Underwriters ALS Golf Classic as well as the Golf Ball Drone Drop and silent auction. A special thanks to Thomas Petersen, from Petersen International Underwriters. The company proudly supports the Golden West Chapter and ALS community each year, in loving memory of his brother-in-law and colleague, John Russo II.
Philanthropy fuels everything we do and we appreciate the meaningful and generous support provided by donors all year long. Your tax-deductible donations support our mission priorities related to research, care services, and public policy and greatly benefits the ALS community. Our fiscal year ends on January 31; your gifts this month and throughout 2022 provide essential help and hope - please make a gift today. Thank you for your dedication to our mission and to those affected by the disease.

Many Ways to Give!

Are you a federal employee and member of the military? January is your last chance to participate in the Combined Federal Campaign (CFC) - but you must act before January 20, 2022! The Golden West Chapter is participating in the current CFC campaign and our code is 97136. Thank you to those who serve and those who support our mission through your generous workplace giving. Questions? Contact Donor Relations Specialist, Linda Gonzales at lgonzales@alsagoldenwest.org.
Is starting or revising your estate plan on your list of New Year’s resolutions? We can help! Please visit alsgiftplanning.org or contact Director of Development, Emily Stork at estork@alsagoldenwest.org for tips for getting started.
Financial planning is often a part of people’s New year’s Resolutions. Fortunately, Dov Lesel, an accomplished Los Angeles City Attorney with extensive investment experience, created DovTalks after his ALS diagnosis in November 2019. Dov wanted other people to benefit from his knowledge so he filmed an 11 segment video series about saving, spending, and investing. Sadly, Dov passed away in April 2021, but he leaves behind this amazing resource for everyone interested in financial literacy.
Do you need to send cards in the New Year?! Enjoy 20% off holiday cards and custom gifts at Minted and help raise funds for the ALS community. Minted will donate 15% of each purchase to the Golden West Chapter. Just use our special promo code at checkout: FUNDRAISEALSAGW

Care Services

It is becoming more common for medical equipment to not be fully covered by insurance, or the time period for a person to receive it can be extensive. The Golden West Chapter provides an equipment loan program (ELP) free-of-charge to families in need of necessary durable medical equipment (DME) and complex rehab technologies (CRT). For more information, please contact your care manager or call 818-865-8067.
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 and standard 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 ymartinez@alsagoldenwest.org. (Limit one subscription per family/household).
Now and always, it is vital to maintain support for your mind, body, and spirit while living with ALS with these helpful apps for meditation and mindfulness. If you are a Kaiser Permanente member, we want to be sure that you know about the free benefit available to you through two leading meditation and mindfulness apps, Calm and My Strength. You can access these through their digital self care portfolio at kp.org/selfcareapps. For non-Kaiser individuals, these apps, and many others like Headspace, have free modules or are available at a low cost through a subscription. All of these helpful self care tools and resources can be used daily to improve your sleep, mood, and relationships, and are available for download through the App Store or Google Play for your mobile device.
The Golden West Chapter is collaborating with Google’s AI for Social Good program to help people whose communication abilities are impacted by ALS. Through Project Euphonia, Google engineers are utilizing machine-learning technology to create systems 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.

Research

The Golden West Chapter has collaborated with our community partner, ClinWiki.org, on their crowd-sourced online resource. In the style of Wikipedia and Yelp, ClinWiki.org takes the current public clinical trial database and enables individuals to annotate, structure and rate research studies while also providing improved search tools for patients and their physicians to find and choose the best trial options. The goal is improved access to information for people with ALS and their families, and an overall increase in medical innovation for better and faster trials. This site is updated daily and is comprehensive and complementary to other clinical trials search tools that are currently available.

A key contributor in this effort has been our long-standing community partner, the Martha Olson-Fernandez Foundation (MOFF). MOFF has been committed to funding ALS patient care initiatives on the Central Coast of California, and to investing in ALS research projects across the United States. The Golden West Chapter is honored to be working with these two organizations on the creation of this important resource for our ALS community. Learn more about this exciting resource for the ALS community.

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.

Advocacy

Learn about our 2021 public policy priorities as we continue to serve, advocate for, and empower people affected by #ALS. Find out more.

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!

In the News

Be sure to visit the newly updated "In the News" section of our website, which serves as an valuable resource for both the ALS community and media professionals to receive timely updates about ALS and other important updates about the ALS community and the Golden West Chapter.

Our deepest gratitude to President Biden for signing into law the Accelerating Access to Critical Therapies for ALS Act. The law will direct $100 million annually for the next four years into ALS research and will also create grant programs and provide early access to promising treatments for patients who aren't accepted into clinical trials. Read his remarks here.
Our thanks to MSNBC for your compelling interview with Emmy-award winner Bradley Whitford about his documentary, “Not Going Quietly,” about health care activist Ady Barkan, who has been living with ALS since 2016.
A special thanks to Bitcoin Magazine and Title Press for your articles about the Running Bitcoin Challenge in memory of Hal Finney, who lost his battle with ALS in 2014. Finney was one of the first known people to run the Bitcoin client from his “Running bitcoin” tweet on January 10, 2009.
Throughout 2021, we are so proud to have shared over 30 stories of our ALS community and helped to shine a spotlight on their efforts to raise ALS awareness and support.