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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.

Register Today!
 

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.

Register Today
 

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.

Register today (for FREE!)
 

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


 

Many Ways to Give!


 

Care Services


 

Research

 

Advocacy


 
 

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.

Watch/read these stories and other recent news below:

Bitcoin Magazine: Join The ‘Running Bitcoin Challenge’ To Fight ALS In Honor Of Hal Finney
December 30, 2021

Spotlight On Our ALS Community in 2021
December 30, 2021

Title Press: Donate Bitcoin to Fight ALS
December 28, 2021

A Message From: Lorene Lee
December 27, 2021

The White House: Remarks by President Biden at Signing of H.R. 3537, the “Accelerating Access to Critical Therapies for ALS Act”
December 23, 2021

A Message From Matt Chaney: Advocacy Brings Us Closer to Treatments and Cures for ALS
December 20, 2021

A Message From Amy Diego: Showing We Care For One Another Is Key to Fighting ALS
December 17, 2021

MSNBC: Bradley Whitford: Ady Barkan Film Erases False Divide Between Personal And Political
December 13, 2021

A Message From Noah Zaitlen: My Research Is Forever Inspired by My Dad and the ALS Community
December 3, 2021

ABC7: Our America: Accomplices - The Story of Ady Barkan | Full Episode
December 3, 2021

Variety: ABC Owned TV Stations To Premiere ‘Our America: Accomplices — The Story of Ady Barkan’ on Hulu
December 2, 2021

Spotlight on... Tom and Carolyn Reese
November 29, 2021

A Message From …. Charlie and Angie Wren - Hope Recognizes No Barriers in the Search for Effective Treatments and Cures for ALS
November 22, 2021

A Message From …. José Fajardo - There is Hope to End ALS
November 12, 2021

A Message From ... Jerelyn Smith
November 11, 2021

Spotlight on ... Sue Morris
November 9, 2021

Fueled by 15 Years of ALS Advocacy, California Renews Funding to the Golden West Chapter for the ALS Community
November 6, 2021

News Release: Golden West Chapter to Honor Amylyx Pharmeceuticals at 2021 Champions for Cures and Care
November 6, 2021