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 Spotlight On...

Celebrating generosity and service to our ALS community


April is Volunteer Appreciation Month
, and the Golden West Chapter celebrates all who have generously given their time and talents in support of the ALS community. From raising much needed funds and embracing our community events, to advocating for legislation on Capitol Hill and raising ALS awareness by sending emails, making phone calls, and posting on social media, they provide help and hope to people and families affected by ALS. Throughout this month, we will be sharing our gratitude to many of the Golden West Chapter’s dedicated volunteers, and the first group that we would like to thank is our Board of Directors and Advisory Trustees.

The Chapter’s volunteer leadership are deeply passionate about our mission and vision. We are extremely grateful to these committed volunteers, who generously share their significant gifts of time, connections, expertise, leadership, funding, and compassion. We appreciate our Board and Trustees for who they are and what they do to support families facing ALS, and to fuel the search for effective treatments and cures for ALS.

Whatever your interests, skills, background and availability, we have many opportunities for you to get involved as a volunteer for the Golden West Chapter!

Find Out More
 

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 April, please check our calendar for information about our upcoming events and online support groups, RSVP for our next ASK ME Webinar: “Estate Planning and ALS,” and sign up for one or more of our many Team Challenge ALS virtual events this Spring.

 

 

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
 

April is Volunteer Appreciation Month: Ways to Give Back

April is Volunteer Appreciation Month, and the Golden West Chapter has endless appreciation for all who have generously given their time and talent in support of our mission. From raising much needed funds and embracing our community events, to advocating for legislation on Capitol Hill and raising ALS awareness by sending emails, making phone calls, and posting on social media - your efforts provide help and hope to people and families affected by ALS. 

Volunteers looking to get involved this April - please show and share your commitment to #ourALScommunity by posting on social media to help raise #ALSawareness and tag our Chapter @alsagoldenwest. You can also sign up for year-round activities to volunteer! We are honored to be your partner, and it is only together that we will defeat ALS.

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Thursday, April 8: All Chapter Trach and Vent Online Support Group


Join us for our next All Chapter Trach and Vent Online Support Group on Thursday, April, 8 from 1:30 pm - 3:00 pm PDT. Please contact Care Manager, Robin Eller, RCP, at reller@alsagoldenwest.org for more information about how to participate.

Learn More
 

It’s Financial Literacy Month: Useful Financial Tips

April is National Financial Literacy Month, so consider these tips while supporting the ALS community:

Learn More
 

NEW! Saturday, April 10: Online Support Group for ALS Families Raising Children

We are excited to announce a new online support group: ALS Families Raising Children. The group’s first meeting will be Saturday, April 10 at 10:00 am PDT and will focus on the unique needs and challenges facing young families during their ALS journeys. Please contact Care Managers Emma Karavardanyan, MA at ekaravardanyan@alsagoldenwest.org or Shannan Sonnicksen, LCSW, MPH at ssonnicksen@alsagoldenwest.org for information.

Learn More
 

April is Occupational Therapy Month: An Important Part of Multidisciplinary ALS Care

Occupational therapy (OT) is the only profession that helps people of all ages do the things they want and need to do by encouraging rehabilitation through the performance of activities required in daily life. April is Occupational Therapy Month, a time to honor these dedicated individuals for their essential role in multidisciplinary ALS care. Those who work in OT help people in living life to its fullest by promoting good health and teaching techniques to prevent further injury, illness, or disability, including people living with ALS. They offer specialized support and services to their patients to help them stay independent and maintain a higher quality of life. OT practitioners are also an important part of our Certified and Recognized Treatment Centers of Excellence.

Find a Center Near You
 

Tuesday, April 13: All-Chapter Online Community Support Group


Join us for our next All-Chapter Online Community Support Group on Tuesday, April 13 from 1:30 pm - 3:00 pm PDT. Special Guest Speaker will be Amy Westermann, Executive Director of ClinWiki.org, who will speak on how to use the ClinWiki platform to make accessing clinical trials more transparent and approachable. ClinWiki is a nonprofit clinical trial search platform that is working with the ALS community to provide transparent and comprehensive information on ALS clinical trials. ALS.ClinWiki.org uses the publicly available clinical trial information and enables experts to annotate and structure trials while providing improved search tools. ClinWiki gives relevant views of clinical trials for people with ALS and their care team so they can find and choose the best trial options. The result is improved results for patients, better and faster trials and an overall increase in medical innovation.

Please contact Care Manager, Robin Eller, RCP, at reller@alsagoldenwest.org for more information about how to participate.

Learn More
 

Tuesday, April 13: It’s Movie Night, and All are Welcome -- *Running for Jim*

We invite you to Kick-Off the 2021 Jim Tracy 5k to Defeat ALS with us at our screening of Running for Jim, the award-winning documentary by Robin Hauser and Dan Noyes on the life of legendary track and field coach, Jim Tracy. This is an incredible story of grit, determination, and the powerful will to finish.

Join us on Zoom on Tuesday, April 13 starting at 5:30 PM PDT for information and a Kick-Off Reception for the 2021 Jim Tracy 5k to Defeat ALS

Then, the screening of “Running for Jim” that will start at 6:00 pm PDT and will conclude with a Film Panel and Q&A with Director, Robin Hauser, and Holland Reynolds, one of the incredible runners featured in the film. Please be sure to RSVP today!

RSVP Today
 

Wednesday, April 14: Turlock/Central Valley Support Group *Special Guest Speaker*

Join us for our next Turlock/Central Valley Online Support Group on Wednesday, April 14 from 1:00 pm - 2:30 pm PDT. Diane Milward, Registered Dietitian and certified Diabetes Educator at the Kaiser Martinez ALS Clinic will be speaking on “Nutrition Considerations for People with ALS”. Please contact Care Manager, Kathleen Kelsey, RCP, at kkelsey@alsagoldenwest.org for more information about how to participate.

Learn More
 

Thursday, April 15: COVID 19 Vaccine and ALS Community

The Golden West Chapter continues to follow developments closely as new COVID-19 vaccines are approved and distribution plans are launched. We have created this web page as a hub for information and resources that will be updated regularly, to inform conversations between families with ALS and their medical teams.

The Chapter worked collaboratively with the California Governor and legislators to ensure that people living with ALS and their caregivers were given early access to the COVID-19 vaccine. After weeks of outreach and advocacy efforts, beginning April 15, expanded guidelines provided by the California Department of Public Health will allow anyone over 16 to be eligible for the COVID-19 vaccine. Please reach out to your Chapter Care Manager with any questions or further information on how to schedule an appointment with your medical facility or at a vaccination site within your community.

In addition, the Golden West Chapter has reached out to the Governor of Hawaii to advocate for early vaccine access on all islands. Currently in Hawaii, only individuals who are 60 years of age or older are eligible; the Chapter will continue to support access for those with a high risk condition like ALS.

Find Out More
 

Friday, April 16: Healthcare Decisions Day

National Healthcare Decisions Day (NHDD) exists to inspire, educate and empower the public and providers about the importance of advance care planning. It is so important for everyone to make these kinds of decisions ahead of time and to put those wishes in writing. Doing so helps us plan ahead, and brings peace of mind to our families. Making these decisions now avoids the difficult situations of our loved ones needing to guess what we would have wanted, as well as enables our caregivers to advocate for us. NHDD helps people understand that advance healthcare decision-making is a process that should focus first on a conversation between loved ones. Learn more about this important public awareness initiative and find resources to help from The Conversation Project, a part of Institute for Healthcare Improvement.

Learn More
 

Saturday, April 17: Walnut Creek/East Bay ALS Online Support Group *Special Guest Speaker!*

Join us for our special guest speaker, Laura Nash, Adaptive Yoga Specialist, who will present on “Adaptive Yoga for Better Quality of Life” during our Walnut Creek/East Bay ALS Caregiver Online Support Group meeting on Saturday, April 17 from 1:00 PM - 3:00 PM PDT. Contact Facilitator Dawn White, MPH, CMC, CCP, at dwhite@alsagoldenwest.org for information on how to participate.

Learn More
 

Sunday, April 17: EF Wallengren ALS Hoopfest

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The 2021 EF Wallengren ALS Hoopfest is just around the corner and we invite you to join us by registering or making a gift at ALShoopfest.org. This is your chance to take a shot at ALS by taking the #ALSHoopfest Challenge. For more information, reach out to us at hoopfest@alsagoldenwest.org.

Learn More
 

Every Monday: Mindfulness, Connection & Perspective

Families facing ALS in select Bay Area counties (San Francisco, San Mateo, and Solano) are invited to develop a framework for considering thoughts and feelings around individual support, facilitated by Care Manager, Taheerah Mujahid every Monday from 1:00 pm - 3:00 pm PDT. Please contact Taheerah at tmujahid@alsagoldenwest.org for more information on how to participate.

Learn More
 

Apply now: The Jane Calmes ALS Scholarship Fund

The Jane Calmes ALS Scholarship Fund is now accepting applications for consideration for the 2021-2022 school year. The fund was established by Mark Calmes, member of the Association’s national Board of Trustees, in memory of his wife, Jane, who bravely fought ALS for eight years. The scholarship fund will provide a $5,000 scholarship for the 2021-2022 school year to twenty selected students seeking a college degree or vocational certificate who are financially impacted by an ALS diagnosis. The deadline for applications is Monday, May 24, 2021 1:00 pm PDT.

Learn More
 

Tuesday, April 20: LGBTQ+ Online Support Group *NEW*

Join us on Tuesday, April 20 from 1:00 pm - 2:30 pm PDT for our new LGBTQ+ Online Support Group. All LGBTQ+ people living with ALS and their family, friends, loved ones and allies are welcome to attend this meeting. Please contact Daniel Potapshyn, Care Manager 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
 

April is Alumni Month: Celebrating Our Napa Valley Ride and Walk Participants!

It is Alumni Month April for our Napa Valley Ride to Defeat ALS and Walk community, and we are so excited to celebrate and thank our amazing alumni participants! Register during the month of April and start your fundraising and recruiting for the chance to win a $500 gift card for Mike’s Bikes! See what our fun Alumni Month challenges are and what you could win here! Have you ridden or walked with us before? To help us celebrate our amazing alumni participants, use code “ALUMNI” for $17 off of your registration fee!

Learn More
 

Tuesday, April 20: Chapter Wide ALS Familial Online Support Group *Special Guest Speaker*

Join us on Tuesday, April 20 from 2:00 pm - 3:30 pm PDT for our Chapter Wide ALS Familial Online Support Group. We will have a special guest speaker, Tara Jones, Genetic Counselor at Cedars-Sinai, who will discuss "Understanding the Genetics of ALS". Please contact Care Manager, Cynthia Marks, RT at cmarks@alsagoldenwest.org for more information about how to participate.

Learn More
 

Wednesday, April 21: ASK ME Webinar: Estate Planning and ALS

Please join us for April’s ASK ME Webinar that will focus on Estate Planning and ALS. The webinar will take place Wednesday, April 21 from 5:00 pm - 6:00 pm PDT and will be facilitated by Christopher Young, attorney at law, from The Alvarez Firm.

RSVP Today
 

Wednesday, April 21: Spanish Language Online Support Group

Please join us on Wednesday, April 21 from 4:00 pm - 5:00 pm PDT for our Spanish Language Online Support Group. Contact Care Manager, Debbie Joy at djoy@alsagoldenwest.org for more information about how to participate.

Lo invitamos a unirse al grupo de Apoyo en Español. Cuándo: Miércoles, 21 abr. 2021 04:00 p. m. Hora del pacífico. Por favor, comunicarse por correo electrónico a Debbie Joy djoy@alsagoldenwest.org para las instrucciones.

Learn More
 

Thursday, April 22: Palo Alto ALS Online Support Group *Special Guest Speaker*

Please join us on Thursday, April 22 from 3:00 pm - 4:30 pm PDT for our Palo Alto ALS Online Support Group. Kevin McCormack from the California Institute for Regenerative Medicine (CIRM) will be speaking on "Using Stem Cells to Help People with ALS". Contact Care Manager, Shannan Sonnicksen, LCSW, MPH at ssonnicksen@alsagoldenwest.org for more information about how to participate.

Learn More
 

NEW DAY- Saturday April 24: San Luis Obispo Online Support Group

In case you missed it, please note our new meeting day for the San Luis Obispo Online Support Group held on Saturday, April 24 from 12:00 pm - 1:30 pm PDT. Please contact Care Manager, Julie Scurich, OTR/L at jscurich@alsagoldenwest.org for more information on how to participate.

Learn More
 

Sunday, April 25: Jim Tracy 5K to Defeat ALS

Registration for the 7th annual Jim Tracy 5k to Defeat ALS is now open (and FREE!) at JimTracy5k.org. Organized by San Francisco University High School students in memory of cross-country & track coach Jim Tracy, this is the perfect opportunity to run or walk a 5k (or any distance you’d like) your way! Join us at our virtual start line on Saturday, April 25! For more information, join us at our Jim Tracy 5k Kick-Off and Movie Night on Tuesday, April 13 at 5:30 pm PDT (RSVP here), or reach out to us at jt5k@alsagoldenwest.org.

Learn More
 

Monday, April 26: Veterans with ALS Online Support Group

Please join us on Monday, April 26 from 1:00 pm - 2:30 pm PST for our Veterans with ALS Online Support Group. Contact Care Managers, Robin Eller, RCP at reller@alsagoldenwest.org  or Kathleen Kelsey, RCP at kkelsey@alsagoldenwest.org for more information about how to participate.

Learn More
 

Tuesday, April 27: Ventura/Santa Barbara County ALS Online Support Group *Special Guest Speaker*

Join us for our next Ventura/Santa Barbara County ALS Online Support Group on Tuesday, April 27 from 4:00 pm - 5:30 pm PDT. Diane Milward, Registered Dietitian and certified Diabetes Educator at the Kaiser Martinez ALS Clinic will be speaking on “Nutrition Considerations for People with ALS”. Please contact Care Manager, Kathleen Kelsey, RCP, at kkelsey@alsagoldenwest.org for more information about how to participate.

Learn More
 

Mark Your Calendar: 2021 Golden West Chapter Activities and Events

Mark your calendar for our 2021 Chapter events and get involved with the ALS community! Have fun while raising ALS awareness and supporting Chapter care services and the search for effective treatments and cures for ALS.

Let's Defeat ALS Together
 

Next Month

Saturday, May 15: SoCal Ride to Defeat ALS and Walk/Trail Run

Join us for the 5th Annual SoCal Ride to Defeat ALS and Trail Run/Walk! Ride, hike or walk a distance of your choice from wherever you are and #challengeALS with us. Register or make a gift today at SoCalRide.org. For more information, reach out to us at socalride@ridetodefeatals.org.

 

Saturday, May 15: Youth Action Day

Youth Action Day is an annual campaign during May, which is ALS Awareness Month, to engage kids and teenagers in the fight against ALS. We encourage young people to participate in the ALS Youth Challenge, taking meaningful action tos raise awareness and support for the ALS community. Please share your Youth Action Day project with our Chapter’s Family Outreach Specialist, Janelle Webb, at jwebb@alsagoldenwest.org so that we can publicly recognize your Youth Action Day efforts!

 

Saturday, May 22: Eat to Defeat ALS

Pick up your dinner at the annual, volunteer-led Team Ryan Eat to Defeat ALS fundraiser benefiting the Golden West Chapter Walk to Defeat ALS! Stop by the Moose Lodge in Monterey, California, where your ticket will include a pre-portioned Italian dinner for four, brought to you in your vehicle with car service by dedicated volunteers from 5:30pm - 9:30pm.

The safety of our “Eaters,” volunteers, and staff is our #1 priority. We will be utilizing health and safety protocols, and following guidelines provided by the Moose Lodge, local authorities, and the CDC.

Tickets are limited, so don’t wait to buy your meal and eat to defeat ALS! For information about sponsorship opportunities, please reach out to Tammy Galt, Director of Community Outreach, Central California at tgalt@alsagoldenwest.org.

 

Thursday, May 26: ASK ME - Speech Issues in ALS and Communication Devices to Help

Please join us for May’s ASK ME Webinar: Speech Issues in ALS and Communication Devices to Help. The webinar will take place on Wednesday, May 26 from 5:00 pm - 6:00 pm PDT and will be facilitated by Amy Roman, Speech Therapist and AAC Specialist from Forbes Norris ALS Treatment and Research Center. RSVP Today.

 

Save the Date!

Saturday, June 5: Day of Remembrance

Please join us on Saturday, June 5 at 11:00 am PDT as we gather together as a community online for a meaningful opportunity for families to honor loved ones lost to ALS. For more information, please contact Family Outreach Specialist, Janelle Webb, at jwebb@alsagoldenwest.org. RSVP today.

 

Celebrate June National Trails Month: Hike to Defeat ALS

Team Challenge ALS has officially launched a new physical challenge during National Trails Month (June)...Hike to Defeat ALS! This is the perfect opportunity to show your support for the ALS community while enjoying the great outdoors! Hike an old favorite trail or choose a new and adventurous challenge with us. We know you’ll find it impactful in so many ways. For more information, reach out to us at hike@alsagoldenwest.org.

 

Thursday, June 24: Rocking OUT ALS

June 24, 2021 marks a night of Rocking OUT ALS as we launch our brand new Music Night featuring artists from around the globe rocking their music and support for the Golden West Chapter and the ALS community. This year’s virtual experience will include musical performances, memorabilia, stories from families living with ALS, and of course, you, supporters of the ALS community. So crank up the volume, invite your friends, and join the movement to rock OUT ALS!

Please contact klembo@alsagoldenwest.org or visit us online at rockingoutals.org to RSVP.

 

Saturday, September 18: Napa Valley Ride to Defeat ALS and Walk

Be a part of the largest single fundraiser in support of our ALS community at the 17th Annual Napa Valley Ride to Defeat ALS and Walk! Register today at NapaValleyRide.org and put the brakes on ALS. For more information, reach out to us at ride@ridetodefeatals.org.

 

Saturday, October 23: Golden West Chapter Walk to Defeat ALS

We invite you to join us for the 2021 Golden West Chapter Walk to Defeat ALS! It’s the largest annual gathering of the ALS community, and a day dedicated to supporting families facing ALS and advancing the search for effective treatments and cures.

For the first time ever, teams and participants representing 31 California counties and the entire state of Hawaii will gather together online, and in their homes and neighborhoods, on the same day to raise ALS awareness and funds, build community, and celebrate loved ones in support of our vision: to create a world without ALS. 

Sign up today for free at Walk-tober.org and walk, hike, or participate your way!

 

October 31: Tri to Defeat ALS

Join us for our first ever Tri to Defeat ALS - inspired by an incredible story of friendship, challenge, perseverance, and triumph. After his ALS diagnosis, triathlete and West Point alum Kevin Heller, our nationally-recognized 2021 ALS Association Hero honoree, reconnected with fellow West Point classmate, Bruce Babbitt. When ALS took Kevin’s ability to compete in the annual Lavaman Triathlon (in Hawaii), he decided to give Bruce his race entry.

Now, Lavaman has offered us 83 entries (in honor of the year Kevin and Bruce graduated West Point) for those who want to join Team Challenge ALS in Hawaii alongside Kevin’s family and friends. Whether you want to join our team for the Lavaman Waikoloa Triathlon, or choose your own, you can swim, run, AND ride for our ALS community. Find out more at TritoDefeatALS.org!

 

Thursday, November 18: Champions for Cures and Care

Save the date to celebrate our ALS community at Champions for Cures and Care on Thursday, November 18! Join us online for an inspirational evening honoring extraordinary individuals and organizations whose heroic efforts are advancing the search for effective treatments and cures for ALS.

 

Monday, December 6: Petersen International Underwriters ALS Golf Classic

We invite you to join The ALS Association Golden West Chapter on Monday, December 6 as we follow the words of Lou Gehrig and "Swing away!” at the Petersen International Underwriters ALS Golf Classic. This year's tournament promises to be an exciting day for participating golfers of all ability levels. Each golf entry includes green fees, player gift packages, delicious food and drinks provided all day long, silent auction, and awards.

The safety of our players, volunteers, and staff is our #1 priority. We will utilize health and safety protocols, and follow guidelines provided by the country club, local authorities, and the CDC. For more information, to sponsor, or reserve your foursome now, please visit ALSGolfClassic.org or contact: Asher Garfinkel, VP of Community Outreach at agarfinkel@alsagoldenwest.org or 818-865-8067 ext.225. 

 

Ongoing: Run to Defeat ALS

Team Challenge ALS is excited to present the first ever Run to Defeat ALS, from wherever you are, whenever you want, in 2021! Are you interested in participating in a local 5k? 10k? Fun run? Trail run? Marathon? And fundraise for the ALS community at the same time? Well, you're in luck because now you can! You pick the event, then register at runals.org, and we'll set you up with a personal fundraising page and staff support along the way to help you cross that finish line and help create a world without ALS. For more information, reach out to us at run@alsagoldenwest.org.

 

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 invaluable 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: