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!
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.
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.
It’s Financial Literacy Month: Useful Financial Tips
April is National Financial Literacy Month, so consider these tips while supporting the ALS community:
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Charitable Deductions - If you don’t itemize your taxes 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.
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Give from an IRA - If you or someone you know is 70½ or older, a gift from an IRA can reduce taxable income and satisfy the required minimum distribution. Just instruct your retirement account custodian to send any amount (up to $100,000) to The ALS Association Golden West Chapter. The Chapter is a qualified tax exempt charity, so there is no tax paid on the transfer.
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.
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.
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.
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!
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.
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.
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.
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.
Sunday, April 17: EF Wallengren ALS Hoopfest
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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A special thanks to those who participated in our latest Ask Me webinar, “All About the Golden West Chapter.” 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!
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The Golden West Chapter is grateful to The Martha Olson-Fernandez Foundation for increasing funding in support of families facing ALS in the Central Coast region this year! Our partnership ensures that people with ALS and their loved ones have access to professional care management, support groups, loans of essential equipment, direct assistance grants, and multidisciplinary clinical care.
Many Ways to Give!
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Give from an IRA - If you or someone you know is 70½ or older, a gift from an IRA can reduce taxable income and satisfy the required minimum distribution. Just instruct your retirement account custodian to send any amount (up to $100,000) to The ALS Association Golden West Chapter. The Chapter is a qualified tax exempt charity, so there is no tax paid on the transfer.
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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
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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).
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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.
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Did you know that The ALS Association Golden West Chapter has 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.
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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.
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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
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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.
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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.
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Take a tour of our research section to learn more about the scientific projects we fund and upcoming clinical trials!
Advocacy
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Learn about our 2021 public policy priorities as we continue to serve, advocate for, and empower people affected by #ALS. Find out more.
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Your Voice Counts! With the help of our advocates, this became possible. Become an ALS advocate, and you too can help change the 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.
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The Golden West Chapter is deeply appreciative to have been selected as a grant recipient from Tambourine, a new philanthropic organization made possible by the generosity of Ben and Divya Silbermann. This grant will allow the Chapter to assess and address inclusion and access issues faced by people with ALS who live in historically underserved and underrepresented communities in Los Angeles County.
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We celebrate the winners of the 2021 Sheila Essey Award for ALS Research Award, Jan Veldink, MD, PhD and the 2021 Richard K Olney Clinician/Scientist Award, Paul Sampognaro, MD. Drs. Sampognaro and Veldink will be honored at the American Academy of Neurology’s annual meeting.
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We are excited to announce that the Golden West Chapter is an official nominee of the Los Angeles Business Journal’s 2021 Nonprofit & Corporate Citizenship Awards!
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Our thanks to the Palo Alto Weekly for your thoughtful article about Michael Heller, who shared his story about navigating the challenges of high school while his father, Kevin, was battling ALS.
Watch/read these stories and other recent news below:
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
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