Golden West Chapter's September 2021 E-Newsletter

 
Spotlight On...

An extraordinary community of supporters

Now in its 17th year, the Napa Valley Ride to Defeat ALS remains the largest single annual fundraising event fueling the search for effective treatments and cures for ALS. This spectacular cycling event has raised more than $9.3 million since its inception.

Working together, this passionate group of volunteers, participants, and families facing ALS have built something extraordinary: a community committed to advancing scientific discovery, providing compassionate care and support, and to empowering people affected by ALS to live their lives to the fullest

We invite you to meet some of the incredible volunteer committee members through this inspiring video - you will be moved to action by their “never give up” spirit. Please sign up or make a gift today to this powerful event or any of the Golden West Chapter’s community outreach events today!

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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 September, please check our calendar for upcoming events and online support groups, including a special presentation from Hope Loves Company; participate in our virtual Napa Valley Ride to Defeat ALS & Walk; and RSVP for our next ASK ME: "ALS Alternative Therapies, Cannabis and More".

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.

It’s STEP- tember: Let’s cover 1800 miles in honor of 1800 families facing ALS

We are excited to introduce you to a brand new way to be a part of something BIG and to make a difference in the movement to defeat ALS. Join with the Golden West Chapter in using Challenge Hound, an awesome platform used by nonprofits and organizations for group challenges. Starting today through October 23 (Walk Day), as a registered Walker, you can dedicate every mile you walk to help raise awareness and support for 1800 families facing ALS that we serve!

We have set a goal to collectively cover 1800 miles in honor of the 1800 families facing ALS served by the Golden West Chapter. Whatever action you take, your efforts will help advocate for and empower our ALS community!

Whether you walk, roll, hike, dance, parade, or run, it all counts towards our 1800 mile goal. You can manually log your activity on Challenge Hound or connect your favorite activity app to automatically sync! Join the challenge today at Walk-tober.org!

Thursday, September 9: Trach and Vent ALS Online Support Group

Please join us for our next Trach and Vent ALS Online Support Group on Thursday, September 9 at 1:30 PM PT/10:30 AM HT. Contact Care Manager, Robin Eller, RCP, at reller@alsagoldenwest.org for more information about how to participate.

Saturday, September 11: ALS Families Raising Children Online Support Group

Join us for our next ALS Families Raising Children Online Support Group on Saturday, September 11 at 10:00 AM PT/7:00 AM HT. Cara Haggerty, Executive Director of Camp Hope Loves Company, will be speaking on their special program for the children of ALS families. Please contact Care Managers, Emma Karavardanyan, MA at ekaravardanyan@alsagoldenwest.org or Shannan Sonnicksen, LCSW, MPH at ssonnicksen@alsagoldenwest.org for more information about how to participate.

Through September: Hawaii, it's time to Give Aloha!

Do you live in Hawaii and shop at Foodland? Then Give Aloha! During the month of September, make a donation at Foodland to support the Golden West Chapter - code #78813 - and Foodland and Western Union Foundation will match a portion of your donation. Remember to make a donation when you check out at your local Foodland during the month of September.

Tuesday, September 14: All-Chapter Online Community Support Group

Join us for our next All-Chapter Online Community Support Group on Tuesday, September 14 at 1:30 PM PT/10:30 AM HT. Jennifer Webb, Program Manager for the HICAP program at the Valley Resource Center, will speak about Medicare changes and Medicare’s upcoming open enrollment in October. Please contact Care Managers, Robin Eller at reller@alsagoldenwest.org or Kathleen Kelsey at kkelsey@alsagoldenwest.org for more information about how to participate.

Wednesday, September 15: Spanish Language ALS Online Support Group

Lo invitamos a unirse al grupo de Apoyo en Español. Cuándo: Miércoles, 15 septiembre 2021 04:00 p.m. Hora del pacífico/01:00 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, September 15 at 4:00 PM PT/1:00 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.  

Saturday, September 18: Napa Valley Ride to Defeat ALS

Be a part of the nation’s largest single fundraiser in support of the ALS community at www.NapaValleyRide.org. Participate your own way from wherever you are in the world!

Join The Ultimate Century Challenge! During the entire month of September, Field Construction and their President, John Grcina, are rewarding the first 90 participants* who ride 100 miles and raise at least $100 with a matching donation of $100! Yes, indoor cycling (Peloton and Zwift) count as miles too!

Have questions? Reach out to us at ride@ridetodefeatALS.org.

*Must be a registered participant for the 2021 Napa Valley Ride to Defeat ALS to win. Register (for free) at NapaValleyRide.org

Tuesday, September 21: Familial ALS Online Support Group

Join us on Tuesday, September 21 at 2:00 PM PT/11:00 AM 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.

Tuesday, September 21: LGBTQ+ ALS Online Support Group

Join us for our next LGBTQ+ ALS Online Support Group on Tuesday, September 21 at 1:00 PM PT/10:00 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, 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.

Friday, September 24: San Francisco and Surrounding Counties ALS Support Group

Join us on Friday, September 24 at 1:00 PM PT/10:00 AM HT for our San Francisco and Surrounding Counties ALS Support Group. Special Guest Speaker: Certified Yoga Therapist Laura Nash, will be speaking on "Adaptive Yoga for ALS." Please contact Care Manager, Taheerah Mujahid, at tmujahid@alsagoldenwest.org for more information about how to participate.

Thursday, September 30: ASK ME featuring Dr. Richard Bedlack

We invite you to our ASK ME educational webinar, “ALS Alternative Therapies, Cannabis and More” on Thursday, September 30, from 5:00pm - 6:00pm PT/2:00pm - 3:00pm HT featuring Richard S. Bedlack Jr., MD, PhD, MS, Professor of Neurology at Duke University School of Medicine. 

Save the Date!

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 for our Zoom start line, and in their homes and neighborhoods, on the same day to raise ALS awareness and funds, connect with the community, and celebrate loved ones in support of our vision: creating a world without ALS. Registered Team Captains and people with ALS will receive Walk Day Kits with ideas and fun supplies to help you “Walk Your Way!”

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

¡Lo invitamos a unirse a nosotros en la Caminata del Capítulo Golden West 2021 para derrotar a ALS! Es la reunión anual más grande de la comunidad de ALS y será un día dedicado a apoyar a las familias que enfrentan ALS y avanzar en la búsqueda de tratamientos y curas efectivos.

Por primera vez en la historia, equipos y participantes que representan a 31 condados de California y todo el estado de Hawái se reunirán, en línea y en sus hogares y vecindarios, el mismo día para crear conciencia y recaudar fondos para la ALS, conectarse con la comunidad y celebrar a los seres queridos. Los que apoyan nuestra visión: crear un mundo sin ALS, los capitanes de equipo registrados y las personas con ALS recibirán kits del día de caminata con ideas y suministros divertidos para ayudarlo a "¡Camine a su manera!"

¡Regístrese hoy gratis en Walk-tober.org y camine, ruede, haga caminata o participe a su manera!

Through December 31: Walk to Defeat ALS Auction Baskets!

This year we are inviting YOU to create an auction basket representing your favorite things to help fundraise for the Golden West Chapter Walk to Defeat ALS!

Here is how you can participate!

1. Must be a registered Walk to Defeat ALS participant.

2. Submit an itemized list of items, a Fair Market value of the items, and a picture of  the basket to Walk@alsagoldenwest.org.

3. Your basket will then be added to our Auction page.

4. Bidding ends 12-31-2021.

5. Proceeds from your basket will be credited to your fundraising page or your Walk team

Questions? Contact us at  Walk@alsagoldenwest.org.

Save the Date!

Thursday, November 18: Champions for Cures and Care

Join us virtually for Champions for Cures and Care with James Beard Award-winning Chef Nancy Silverton and hosted by Billy Harris, on Thursday, November 18 at 6:00 pm PST/4:00 pm HST. It will be an inspirational and delectable evening to celebrate the ALS community and recognize extraordinary individuals and organizations whose heroic efforts are accelerating the search for effective treatments and cures for ALS.

Sponsors and ticket holders will savor tapas and libations delivered to their door from Chef Silverton’s Osteria Mozza. All guests will enjoy an exciting auction, musical and celebrity guests, and the presentation of the Golden West Chapter's highest honors, the Essey Awards.

For inquiries, please contact Asher Garfinkel, Vice President of Community Outreach at agarfinkel@alsagoldenwest.org or (323) 497-4830.

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 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. Space is limited. 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 (323) 497-4830. 

Ongoing: Run to Defeat ALS

Are you interested in participating in a local 5k, 10k, fun run, trail run, marathon, AND want to fundraise for the ALS community at the same time? Well, now you can! You pick the event, then register at RunALS.org, and we'll help you cross that finish line! For questions, send us an email at run@alsagoldenwest.org today.

Ongoing: Hike to Defeat ALS

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 event to show your support for the ALS community while enjoying the great outdoors! Register today (for FREE!) at HikeALS.org and #challengeALS! For questions, send us an email at hike@alsagoldenwest.org 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, 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

• For over a decade, Tom Horton and his loved ones have raised awareness and funds for the ALS community. Tom’s mother, Anastasia “Peacha” Horton, lost her battle with ALS in 2005. On August 29, Tom Paddled to Defeat ALS at the annual Catalina Classic Paddleboard Race - his 15th race. This year, Paddling to Defeat ALS will have raised more than $150,000! We are grateful to Tom, his friends, his family, and his donors for their dedication and support in the fight against ALS. See their pictures here and visit www.paddlingtodefeatals.org.

• Thanks to everyone who joined us for the Golden West Chapter Walk to Defeat ALS Kick-Off! It was great seeing new and familiar faces as we discussed this year’s virtual Walk event. In case you missed it, watch it here.
  

• We appreciate everyone who joined us for our educational webinar, “Estate and Legacy Planning: Helpful Tools and Resources.” A special thanks to Sean Burr, registered representative from V.S. Associates, Inc., for his informative presentation on the benefits of estate conservation, estate taxes, wills and various types of trusts, and much more. Watch the recording here.

Many Ways to Give!

• The ALS Association Golden West Chapter proudly partners with the Combined Federal Campaign (CFC) for federal employees and members of the military. We are participating in the 2021 Fall CFC campaign and the Golden West 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 at lgonzales@alsagoldenwest.org.
  

• Sign up today from Kroger’s Community Rewards Program and Kroger will donate a portion of your purchases to the Golden West Chapter. Login to your Ralphs or City Market account, search for the “Golden West Chapter” or “RP593”, and hit save. For more information visit their website or contact Linda Gonzales, Donor Relations Specialist, at lgonzales@alsagoldenwest.org.
  

• Do you live in Hawaii and shop at Foodland? Then Give Aloha! During the month of September, make a donation at Foodland to support the Golden West Chapter - code #78813 - and Foodland and Western Union Foundation will match a portion of your donation.
  

Care Services

• One of the challenges for people living with ALS and their loved ones is finding resources that are in Spanish. The Golden West Chapter of The ALS Association offers many tools and materials for those affected by ALS who need resources in Spanish on our website.

  Uno de los desafíos que pueden surgir para las personas que viven con ELA y sus seres queridos es encontrar recursos en Español. El Capítulo Golden West de la Asociación de ELA, ofrece recursos para aquellos afectados con ELA.  Los encuentra en Español en nuestro sitio web.

• 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 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 Jody King, Operations Administrative Assistant, at jking@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. For additional questions, please contact Jennifer Claxton, Director of Care Services at jclaxton@alsagoldenwest.org.

Research

• The Golden West Chapter has collaborated with our community partner, ClinWiki.org, on their new 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 new 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! With the help of our advocates, this became possible. 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 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.

• A special thanks to Celebrity IOU: Joyride hosts Cristy Lee and Ant Anstead, for featuring Renée Zellweger, co-captain of Team Nanci, and helping give back to the devoted caregivers of her dear friend, Nanci Ryder. The new series premiered last month on Discovery+ and gives celebrities a chance to restore a car for someone deserving and special in their lives.
  

• Thanks to Juliette Goodrich and Molly McCrea of KPIX CBS San Francisco Bay Area for your compelling story about ALS advocates, Gwen and Nathan Petersen. Gwen first started experiencing her symptoms of ALS, just one year after her wedding, and was diagnosed in 2018, at the age of 32. Read more on their efforts to fuel the search for effective treatments and cures for ALS.
  

• Thank you to Lisa Krieger from the Bay Area News Group for your article about Sandy Morris, and her fight to make changes to the California's End of Life Option Act. Learn more about Sandy and her advocacy efforts for those living with ALS and other neurologic diseases and disabilities.
  

Watch/read these stories and other recent news below:

Cision PRWeb: Join the 17th Annual Napa Valley Ride to Defeat ALS and Walk on Saturday, September 18, 2021!
September 12, 2021

Spotlight On ... Art and Barb Pahr
September 4, 2021

New Potential Therapeutic Target Identified in CHMP7
August 31, 2021

The Mercury News: When Aid-In-Dying Means You Have to Go Before You’re Ready
August 29. 2021

Preparing for the Physical Impacts of an ALS Diagnosis
August 24, 2021

Researcher Spotlight: Nishal Shah, Ph.D.
August 17, 2021

What Is FTD and How Is It Connected to ALS?
August 10, 2021

KPIX CBS San Francisco Bay Area: A Dosage Of Hope: ALS Patients Fight For a Chance At Promising Therapies
August 10, 2021

Cytokinetics Announces Start of COURAGE-ALS, a Phase 3 Clinical Trial of Reldesemtiv in Patients With Amyotrophic Lateral Sclerosis
August 3, 2021