Golden West Chapter's August 2022 E-Newsletter
Spotlight On...
The Importance of Community in Advancing Our Mission
Did you know that ALS advocacy, research, and care are powered by people who get involved in the Golden West Chapter’s Community Outreach events?
Every person who joins the fight to defeat ALS makes an impact - whether it's event participation, volunteering, community organizing, donating, or fundraising, each commitment in honor or in memory of someone affected by ALS brings us closer to creating a world without ALS.
We hope that you'll mark your calendar and sign up now for our fall events kickoff celebration, where you can learn more about our fast-approaching lineup of opportunities for you, family, friends, colleagues, and neighbors to participate, advocate, educate, donate, and connect with others who care about the ALS community. Whether you are interested in sports, outdoor activities, local ALS resources, music, research, advocacy, volunteerism, meeting other families, or just spending quality time with your own family and friends, the Chapter offers a wide array of enjoyable ways to raise much-needed ALS awareness and funding.
To take action in support of compassionate care, important advocacy initiatives, and cutting-edge research, find out what opportunities are nearest you.
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 August, please check our calendar for upcoming events and online support groups, including our Fall Events Kickoff, and our next ASK ME Webinar: Estate Planning and ALS.
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.
Monday, August 1 - Wednesday, August 10: Napa Valley Ride and Walk Team Week!
Join us as we celebrate our Napa Valley Ride to Defeat ALS and Walk teams and participants for TEN DAYS during Team Week! Monday, August 1 through Wednesday, August 10, registered participants have the opportunity to win up to $1,000 in Mike’s Bikes gift cards! Use our special Team Week registration discount code “TEAMWEEK” for $18 off your registration in honor of our 18th year hosting this event. Get started today at NapaValleyRide.org or contact ride@ridetodefeatals.org for assistance.
Sunday, August 7: Dwight Clark Day
Every year, the San Francisco 49ers use this date to remember NFL legend Dwight Clark (whose jersey number was “87”) and to celebrate his legacy both on and off the field. Through past programmatic experiences, including Training Camp Community Corner, and a presence at our Walk to Defeat ALS and other Community Outreach events, the 49ers support the fight against ALS alongside the Golden West Chapter, to raise funds and awareness, advance research efforts, pursue public policy initiatives, and provide professional care services to families facing ALS.
Tuesday, August 9: All-Chapter Online ALS Community Support Group
Please join us for our next All-Chapter Online ALS Community Support Group on Tuesday, August 9 at 1:30 PM PDT /10:30 AM HST. Contact Care Manager, Robin Eller, RCP, at reller@alsagoldenwest.org or Kathleen Kelsey, RCP at kkelsey@alsagoldenwest.org for more information about how to participate.
NOW LIVE: A new resource to help the ALS community
The Golden West Chapter is pleased to announce a venture launched by one of our long-time partners. Ability Central publicly launched a new website to provide information and resources to the more than 61 million Americans who are deaf, disabled, or neurodiverse. The Ability Central Portal offers support for a wide range of disabilities, covering vision, hearing, mobility, and cognitive needs. The Ability Central Portal includes unique databases and custom-built resources to meet the needs of people with disabilities including people living with ALS. These tools include a device finder, service locator, event database, and resource library.
Providing opportunities for education and collaboration, the portal uses input and feedback from site visitors to update and expand its information. Visitors can comment, add reviews or feedback, and anyone can submit new content for the portal. Access the Ability Central Portal at www.abilitycentral.org.
Thursday, August 11: Trach and Vent ALS Online Support Group
Please join us for our next Trach and Vent ALS Online Support Group on Thursday, August 11 at 1:30 PM PDT /10:30 AM HST. Contact Care Manager, Kathleen Kelsey, RCP, at kkelsey@alsagoldenwest.org for more information about how to participate.
Throughout August: Make an impact in your local community
Your participation in the Walk to Defeat ALS® impacts people living with ALS and their families in YOUR community and supports ALS research around the globe. Donations fund professional care management, educational programs, support groups, our equipment loan program, access to multidisciplinary clinical care, promising ALS research projects, and much more.
When you sign up to participate for the Walk to Defeat ALS in August, statistics show that you are more likely to raise greater ALS awareness and support by event day. You can walk individually, join a team, or captain your own team. It’s free to sign up, so please join us at WALK-tober.org.
Tuesday, August 16: LGBTQIA+ ALS Online Support Group
Please join us for our next LGBTQIA+ ALS Online Support Group on Tuesday, August 16, at 1:00 PM PDT/10:00 AM HST. All LGBTQIA+ people living with ALS and their family, friends, loved ones and allies are welcome to attend this meeting. Contact Daniel Potapshyn, Support Group Facilitator at dpotapshyn@alsagoldenwest.org for more information about how to participate.
Tuesday, August 16: Living With ALS Under 50 Online Support Group
Join us for our next Living with ALS Under 50 Online Support Group on Tuesday, August 16 at 4:00 PM PDT/1:00 PM HST. Please contact Emma Karavardanyan, M.A. at ekaravardanyan@alsagoldenwest.org or Shannan Sonnicksen, LCSW, MPH, at ssonnicksen@alsagoldenwest.org for more information about how to participate.
Registration is NOW OPEN: Camp Hope Loves Company!
Registration is now open for Camp Hope Loves Company, a free weekend retreat for children, teens, young adults, and families affected by ALS. The camp will be held on November 18-20 in Boulder Creek, CA. It is a wonderful opportunity for families to come together to connect with peers who share in their experiences, enjoy recreational activities such as swimming, hiking, archery, and more, and create long-lasting memories and connections.The Golden West Chapter is proud to be a sponsor of this important and special program. If you are interested in registering, click here.
Wednesday, August 17: Español/Spanish Language ALS Online Support Group
Lo invitamos a unirse al grupo de Apoyo en Español. Cuándo: Miércoles, 17 agosto 2022 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, August 17 at 4:00 PM PDT/1:00 PM HST for our Spanish Language ALS Online Support Group. Contact Care Manager, Debbie Joy, at djoy@alsagoldenwest.org for more information about how to participate.
Thursday, August 18: Our next ASK ME webinar!
Please join us on Thursday, August 18 for our next ASK ME educational webinar, "Estate Planning and ALS" featuring Kate Phelan Lowen, Senior Vice President, Regional Director of Wealth Planning and Trust Advisory at U.S. Bank Private Wealth Management.
Friday, August 19: Murrieta/Palm Springs Online Support Group
Join us for our next Murrieta/Palm Springs Online Support Group on Friday, August 19 at 11:00 AM PDT and hear from special guest speaker Tim Crawford from the Senior Home Care Referral Agency, who will discuss the process of finding a caregiver and the services his agency provides. Please contact Care Manager, Mika Flanngan, MSW, at mflanngan@alsagoldenwest.org for more information about how to participate.
Sunday, August 21: Honolulu Zumbathon to benefit the Hawaii Walk to Defeat ALS
Join us for an in-person Zumbathon on Sunday, August 21 from 3:00 - 5:00 pm HST to support the Hawaii Walk to Defeat ALS. Please contact AnnMarie at aingham@alsagoldenwest.org to RSVP.
*PLEASE JOIN US!* Wednesday, August 24: Fall Events Kick-Off
Join us on Wednesday, August 24 for our Chapter Fall Events Virtual Kickoff as we celebrate the return to in-person and “hybrid” events! Learn everything you need to know about this year’s engagement opportunities and activities, hear Chapter updates about the pursuit of ALS treatments and cures, connect with fellow teams and participants and learn tips about how easy it is to fundraise!
Wednesday, August 24: All-Hawaii Online Support Group
Please join us for our next All-Hawaii Online Support Group on Wednesday, August 24 at 4:00 PM HST. There will be a special guest speaker, Keith Jackson, an AAC Regional Consultant from Eye Tech Digital Systems. Contact Care Manager, Rex Like, MA, at rlike@alsagoldenwest.org for more information about how to participate.
Looking back to August 2014: The Anniversary of the #ALSIceBucketChallenge
It was eight years ago this month that the ALS Ice Bucket Challenge swept across the world on social media. Donations from the challenge spurred a massive increase in our capacity to invest in promising research, the development of assistive technologies, and increased access to care and services for people living with ALS. Over the years, every August, people have continued to challenge each other to raise awareness and support for our ALS community. Please take a moment to watch these many ALS Ice Bucket Challenge videos, taken throughout the years, which include many Golden West Chapter supporters like Academy Award-winner Renee Zellweger, the San Francisco Giants, notable individuals in ALS research and care, and others in the ALS community. Thank you to everyone who took the challenge, and everyone who continues to support people living with ALS and their loved ones now and always.
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. 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!
Next Month!
Monday, September 12: Petersen International Underwriters ALS Golf Classic
Attention Golfers! We invite you to join the Golden West Chapter at the Petersen International Underwriters ALS Golf Classic on Monday, September 12 in beautiful Stevenson Ranch, California. Now in its 21st year, the tournament has raised critical funding for the Golden West Chapter Golden West Chapter’s interdependent mission priorities related to care services, advocacy, and ALS research.
The tournament promises to be an exciting day! Each golf entry includes green fees, player gift packages, delicious food and drinks provided all day long, hosted cocktails, fun contests, and the 19th Hole Reception.
For more information, please contact Katey Randall, Special Events Coordinator, at krandall@alsagoldenwest.org.
Saturday, September 17: Central Coast Ride and Rally to Defeat ALS
Save the date and join us at Bang the Drum Brewery in San Luis Obispo on Saturday, September 17 for the Central Coast Ride and Rally to Defeat ALS. This NEW special event will offer participants 34, 25, and 18 mile cycling routes or an approximate 1 mile, wheelchair and family-friendly walk throughout this beautiful community. Cross the finish line filled with inspiration and enjoy delicious food and cold beverages. For more information contact Tammy Galt, Director, Community Outreach - Central California at 559-285-0074.
Saturday, September 24: Napa Valley Ride to Defeat ALS and Hike/Walk
We are excited to gather together in person in the beautiful Napa Valley on Saturday, September 24! This will be a year to remember, and we are thrilled to make it the biggest and best Napa Valley Ride to Defeat ALS and Walk yet!
Register TODAY to join the largest ALS fundraising event in the country! We offer routes from 9 miles to 100 miles for all levels, along with a short walk.
If you are unable to attend in person, we invite you to ride or walk your way from anywhere with our support by signing up as a virtual participant and experiencing our event day programming via live stream.
Interested in volunteering? We need you, too! Join our incredible group of more than 100 volunteers on event-day! Any questions, email Kaisha Johnson, Director, Team Challenge ALS - North, at ride@ridetodefeatals.org!
Save the Date!
Walk-tober Starts Now: 2022 Walk to Defeat ALS events!
We are very excited to announce that we will gather to celebrate the 2022 Golden West Chapter Walks to Defeat ALS IN PERSON this fall! Registration for Walks in eight different communities is now OPEN!
The Walk to Defeat ALS is the #1 way to rally, fundraise, and build awareness for those living with ALS today and those who will be diagnosed in the future. It's a free and inclusive event for families to fight ALS together, while building local community, sharing resources and celebrating loved ones.
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Saturday, 9/17 - Hawaii |
Saturday, 10/15 - East Bay |
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Saturday, 10/1 - Monterey Bay |
Saturday, 10/22 - Central Valley |
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Saturday, 10/8 - Kern County |
Sunday, 10/23 - Inland Empire |
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Saturday, 10/8 - Silicon Valley |
Sunday, 11/6 - Greater Los Angeles |
If you are unable to attend in person, we invite you to walk your way from anywhere with our support by signing up as a virtual participant and experiencing our event day programming via live stream from select sites. Walk in honor. Walk in memory. Walk in support. Sign up TODAY at Walk-tober.org for the largest annual gathering of the ALS community!
ALL YEAR: Hike to Defeat ALS
Throughout the year, the Hike to Defeat ALS is an opportunity to trek your favorite trails and raise funds that directly support the Chapter's efforts to find effective treatments and cures for ALS. It is the perfect year-round activity to show your support for the ALS community while enjoying the great outdoors! For questions, send us an email at hike@alsagoldenwest.org today.
ANYTIME, ANYWHERE: Run to Defeat ALS
Our ongoing Run to Defeat ALS "do-it-yourself" program is the perfect opportunity to participate in a local 5k, 10k, fun run, trail run, half marathon, or marathon, AND fundraise in support of the ALS community at the same time! Pick the event you’d like to participate in, then register at RunALS.org to get set up with a personal fundraising page, and we'll help you cross that finish line! For questions, send us an email at run@alsagoldenwest.org today.
Special Thanks
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Thank you to the Cochran Family for a successful Memorial Regatta, honoring Joe Cochran on Sunday, July 31. 11 boats raced in a sailing competition at the Kaneohe Yacht club to raise funds for the Hawaii Walk to Defeat ALS. To see photos from the event, please click here!
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MAHALO to everyone who was able to join us for our Hawaii Open House Meet and Greet to kick off the summer and Walk season together, raising ALS awareness and support. We were glad to be reunited in person and look forward to seeing you again at our Hawaii Walk to Defeat ALS on Saturday, September 17. To see photos from our Open House, please click here! If you attended and took photos, please send them to us at media@alsagoldenwest.org.
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Thank you to those who joined our quarterly Familial ALS Support Group last month. We look forward to reconnecting again on Tuesday, October 18 at 2:30 PM PDT /11:30 AM HST. For more information, please click here.
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Our thanks to veterans and families who attended our quarterly Veterans with ALS Support Group last month. We look forward to reconnecting again on Monday, October 24. For more information, please click here.
Many Ways to Give!
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August is National Make-a-Will Month and the Golden West Chapter is marking the month with our next ASK ME educational webinar on Thursday, August 18 from 5:00pm - 6:00pm PDT / 2:00pm - 3:00pm HST featuring Kate Phelan, Senior Vice President/Regional Director of Wealth Planning and Trust Advisory at U.S. Bank Private Wealth Management.
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The ALS Association Golden West Chapter proudly partners with the Combined Federal Campaign (CFC) for federal employees and members of the military. The Golden West Chapter is participating in the 2022 Fall CFC campaign starting September 1st and our Chapter 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.
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Summertime is the perfect time for cookouts and picnics. Before your next shopping trip or next time you are at the store, sign up for Kroger’s Community Rewards Program. When you do, a portion of your purchases is automatically donated to the Golden West Chapter, at no additional cost to you! Login to your Ralphs or City Market account, search for “Golden West Chapter” or “RP593”, and hit save. Questions? Please contact Linda Gonzales, Donor Relations Specialist, at lgonzales@alsagoldenwest.org.
Care Services
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Many people living with ALS may find it difficult to communicate as the disease progresses. It’s important to make decisions about your medical care and future plans ahead of time so that others understand your wishes. Our guide on planning and making decisions will be a helpful resource in learning about the different types of choices to make in order to plan for your future. In addition, Five Wishes is a comprehensive, person-centered advance care planning program that offers an easy-to-use approach to having effective and compassionate conversations.
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Coping with a loved one's diagnosis of ALS can be especially hard for children and young adults. When a parent or grandparent has any disease, one of the hardest things to do is discuss the illness, progression, and emotions with young ones. The Golden West Chapter is here to ensure that no one, big or small, is alone when facing ALS, and to offer many tools and resources for our ALS community.
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The Golden West Chapter offers many topic specific online Support Groups. Experience all of the benefits of attending an in-person meetings 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.
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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 to hear more from some of our care managers and visit our website to learn how to access services.
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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.
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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 Yesenia Martinez, Operations Administrative Assistant, at ymartinez@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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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.
Research
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CLINICAL TRIAL RECRUITMENT ANNOUNCEMENT*
*For recruitment purposes only. DNL343 is an investigational drug and is not approved by any Health Authority. The Golden West Chapter does not endorse one clinical trial or investigational medication over another.
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Are you looking to contribute to SOD1-ALS research? The ATLAS Study, sponsored by Biogen, is now enrolling adults who are carriers of certain SOD1 gene variants. If you think you may be a carrier of a certain SOD1 gene variant (also called a gene mutation) and you do not have signs or symptoms of ALS, the ATLAS Study may offer you the opportunity to contribute to SOD1-ALS research. Those who qualify will receive all study-related treatments and assessments, including genetic testing and counseling, at no cost. Reimbursement for study-related travel is available. Find out more!
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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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Federal funding for ALS research must be expanded exponentially to provide new treatment options to cure and prevent ALS. Each year, Congress makes critical decisions about the future of ALS research through the annual appropriations process. Contact your member of Congress TODAY urging them to support increased investments in ALS research.
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Learn about our 2022 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! Become an ALS advocate, and you too can help shape laws and policies that affect thousands of persons with ALS and their families!