Spotlight On...
May is ALS Awareness Month
May is ALS Awareness Month! For individuals and families living with ALS and in the search for treatments and cures, every moment matters. This month, we will share many stories from the ALS community that inspire and build connections and raise critically-needed awareness and support for our mission and vision. One example of our ALS community’s “Never Give Up” spirit can be found in Juan and Susana Espinoza’s story, which was recently featured in a special profile on CBS LA Sports.
The Golden West Chapter provides help and hope, which is made possible by the many people who care about the ALS community. Here are some ways that YOU can show your support and raise ALS awareness! Please show and share your commitment to #ourALScommunity by posting on social media to help raise #ALSawareness and tag our Chapter @alsagoldenwest.
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 May, please check our calendar for information about our upcoming events and online support groups, Youth Action Day, or our virtual SoCal Ride to Defeat ALS, and to RSVP for our next ASK ME Webinar: “Speech Issues in ALS and Communication Devices to Help."
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.
Saturday, May 8: ALS Families Raising Children Online Support Group *NEW*
Join us for our next ALS Families Raising Children Online Support Group on Saturday, May, 8 from 10:00 am - 11:30 am PDT. This group will focus on the special needs and challenges facing families as they navigate living with ALS. 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.
Sunday, May 9: Mother's Day
The Golden West Chapter wishes all of the mothers, grandmothers, aunties, pet moms, maternal figures, and folks who love someone who is a mom, a very Happy Mother's Day! We are grateful and honor them all - whether they are living with ALS, caring for, or have cared for, someone battling the disease. We also remember those mothers and grandmothers that we have lost. They inspire our Never Give Up spirit and efforts to advance the search for effective treatments and cures for ALS. Please make a gift in support of all of the mothers affected by ALS.
Tuesday, May 11: All-Chapter Online ALS Community Support Group
Join us for our next All-Chapter Online ALS Community Support Group on Tuesday, May 11 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.
For a limited time only: Triple Crown Challenge for the SoCal Ride!
Join the Triple Crown Challenge for May ALS Awareness Month! You have the entire month of May to ride 135 miles, a combination of all three cycling routes for the event, and earn our first ever Finishers Medal. If you haven’t already, sign up today at SoCalRide.org and Earn It!
Thursday, May 13: Trach and Vent ALS Online Support Group
Please join us for our next Trach and Vent ALS Online Support Group on Thursday, May 13 from 1:30 pm - 3:00 pm PDT. Contact Care Manager, Robin Eller, RCP, at reller@alsagoldenwest.org for more information about how to participate.
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 to engage kids and teenagers in the fight against ALS. We encourage young people to participate in the ALS Youth Challenge, taking meaningful action to 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!
Tuesday, May 18: LGBTQ+ ALS Online Support Group *NEW*
Join us on Tuesday, May 18 from 1:00 pm - 2:30 pm PDT for our new LGBTQ+ ALS 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.
Tuesday, May 18: Familial ALS Online Support Group
Join us on Tuesday, May 18 from 2:00 pm - 3:30 pm PDT 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.
Wednesday, May 19: Spanish Language ALS Online Support Group
Please join us on Wednesday, May 19 from 4:00 pm - 5:00 pm PDT for our Spanish Language ALS 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, 19 mayo 2021 04:00 p. m. Hora del pacífico. Por favor, comunicarse por correo electrónico a Debbie Joy djoy@alsagoldenwest.org para las instrucciones.
Friday, May 21: Murrieta and Palm Springs ALS Online Support Group
Join us on Friday, May 21 from 11:00 am - 12:15 pm PDT for our Murrieta and Palm Springs ALS Online Support Group. Please contact Care Manager, Mika Flanngan, MSW, at mflanngan@alsagoldenwest.org for more information about how to participate.
Saturday, May 22: Eat to Defeat ALS
We can't gather in person, but "The Eat" is on! Purchase your ticket and 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 Del Rey Oaks, California, on May 22. Your ticket will include a pre-portioned Italian dinner for four, brought to you in your vehicle with safe car service by dedicated volunteers from 5:30 pm - 9:30 pm.
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 ticket purchases and sponsorship opportunities, please reach out to Tammy Galt, Director of Community Outreach, Central California, at tgalt@alsagoldenwest.org.
NEW DAY- Saturday May 22: San Luis Obispo ALS Online Support Group
In case you missed it, please note our new meeting day for the San Luis Obispo ALS Online Support Group held on Saturday, May 22 from 11:00 am - 12:30 pm PDT. Please contact Care Manager, Julie Scurich, OTR/L, at jscurich@alsagoldenwest.org for more information on how to participate.
DEADLINE Monday, May 24 - 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 at 1:00 pm PDT.
Monday, May 24: Veterans with ALS Online Support Group
Please join us on Monday, May 24 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.
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.
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 and connect with the community, while raising ALS awareness and supporting Chapter care services and the search for effective treatments and cures for ALS.
Next Month
This June: Celebrate Lou Gehrig Day with the Golden West Chapter
This year, the inaugural “Lou Gehrig Day,” will be celebrated throughout Major League Baseball during the 2021 Season. The focus will be to honor the legacy of Gehrig and all those lost to the disease that bears his name; to raise ALS awareness and funding; and to celebrate the ALS community. We are commemorating Lou Gehrig Day on three different dates with our MLB team partners: Wednesday, June 2 with the Los Angeles Dodgers, on Thursday, June 3 with the San Francisco Giants, and on Tuesday, June 8 with the Oakland Athletics. Additional details about ceremonial elements and tickets will be announced when available.
Saturday, June 5: Day of Remembrance
Please join us on Saturday, June 5 at 11:00 am PDT to honor and remember special friends and loved ones lost to ALS. For more information, please contact Family Outreach Specialist, Janelle Webb, at jwebb@alsagoldenwest.org or visit our website. Please RSVP and/ or make a tribute gift today.
Celebrate June National Trails Month: Hike to Defeat ALS
Team Challenge ALS has officially launched the first-ever Hike to Defeat ALS to commemorate National Trails Month (June)! 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! To register (for free) and #challengeALS today, sign up at www.HikeALS.org.
Thursday, June 17: Napa Valley Ride Kickoff
Join the 17th annual Napa Valley Ride to Defeat ALS and Walk Kickoff on Thursday, June 17 at 6 PM PDT! We will have a quick presentation about what event-day will look like this year and more information to make your Napa Valley Ride experience the best it can be, and then end with an open forum Q&A to answer any questions you may have. We don’t want you to miss it! RSVP here to join us and find out more about the largest ALS fundraiser in the country! Also, please feel free to send this information to anyone you think may want to join us this year. Hope to see you there!
Thursday, June 24: Rocking OUT ALS
June 24, 2021 marks a special night of Rocking OUT ALS featuring Rick Springfield, Jake Shimabukuro, Will Thoren, The Coolies, and so many more 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 our 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.
Save the Date!
Saturday, September 18: Napa Valley Ride to Defeat ALS and Walk
Be 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, connect with the community, and celebrate loved ones in support of our vision: creating a world without ALS.
Sign up today for free at Walk-tober.org and walk, hike, or participate your way!
Sunday, 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
Join us virtually for Champions for Cures and Care with Chef Nancy Silverton and hosted by Billy Harris, on Thursday, November 18 at 6:30 pm PST for an inspirational 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 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 fundraising for the ALS community at the same time? Well, you're in luck because now you can! You pick the event or route, 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
-
A special thanks to those who participated in our last Ask Me webinar, “Estate Planning and ALS.” In case you missed it, you can watch it here, and we encourage you to share it with others to learn more about our Chapter as well to inspire them to get involved!
-
The Golden West Chapter is grateful to participants and supporters of the EF Wallengren Hoopfest and Jim Tracy 5K to Defeat ALS!
Many Ways to Give!
-
Life and Estate Planning for Everyone Impacted by ALS - The ALS Association Golden West Chapter is here to help address the unique needs that people with ALS, their families, friends, and caregivers face when planning for their futures. Click here to get started on a plan that aligns with your future goals, establishes your philanthropic legacy, and provides peace of mind. Download the Chapter’s free Estate Planning Guide here.
-
Charitable Deductions - If you don’t itemize in 2021, you can deduct cash gifts up to $300 on your taxes. If you’re a couple filing jointly, you can deduct up to $600. And if you do itemize, the limits on your charitable deductions have increased. For more ways to support the ALS community in ways that will benefit you and your family financially, please visit alsgiftplanning.org.
Care Services
-
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.
-
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 for services.
-
The Golden West Chapter is pleased to partner with our longtime community supporter, NuMotion, to launch our new equipment loan program for families facing ALS living in Northern California regions. 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 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.
-
Watch Tina Mikkelsen, daughter of founding Board Member, Dick Essey, and Board Member, Niall Foley present the 2021 Sheila Essey Award for ALS Research to Jan Veldink, MD, PhD, at the American Academy of Neurology’s annual meeting.
Watch/read these stories and other recent news below:
Cytokinetics and The ALS Association Renew Partnership to Advance the Fight Against ALS CBS News LA: ALS Awareness Month Dr. Jan Veldink Receives 2021 Sheila Essey Award The Golden West Chapter selected as a grant recipient from Tambourine PALO ALTO WEEKLY: Heller family makes long journey to Sacred Heart Prep from M-A The Mercury News: Los Gatos Man Says Nonprofit Work Lightens His Load in Battling ALS Spotlight On: Stacy Title, Trailblazer in Hollywood and as an ALS Advocate MLB: Inaugural Lou Gehrig Day Set for June 2 Spotlight On: Leila Sulentic, Event Chair, Jim Tracy 5k to Defeat ALS Kevin Heller Receives The ALS Association’s Hero Award Today: 'Meant to be': Man Finds Loving Home for Senior Rescue Dog 3 Days Before Dying Broadway World: All Star Virtual Comedy ALS Fundraiser Announced Next Weekend Chabad.org: Worldwide Good Deeds This Week to Mark 49th Birthday of Rabbi With ALS NewsChannel 3-12: Santa Barbara Activists Host Car Caravan Demanding Guaranteed Health Care Neurology Today: Black Patients with ALS Face Significant Diagnostic Delays, Large Study Confirms
May 19, 2021
May 5, 2021
Apr 23, 2021
April 5, 2021
April 4, 2021
March 14, 2021
March 9, 2021
March 4, 2021
March 4, 2021
March 1, 2021
February 10, 2021
February 8, 2021
February 8, 2021
February 6, 2021
February 4, 2021