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Golden West Chapter's August 2022 E-Newsletter

 
Spotlight On...

The Importance of Community in Advancing Our Mission

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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.

Learn More
 



Golden West Chapter Updates & Upcoming Events

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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

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The Golden West Chapter offers many Online Support Group Meetings. Experience all of the benefits of attending an in-person support group from the comfort of your own home. Please visit our Chapter's online calendar for monthly updates, such as guest speakers, new meetings and date changes.

Mark Your Calendar
 

Monday, August 1 - Wednesday, August 10: Napa Valley Ride and Walk Team Week!

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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 codeTEAMWEEKfor $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.


Sign Up
 

Sunday, August 7: Dwight Clark Day

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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.

Learn More
 

Tuesday, August 9: All-Chapter Online ALS Community Support Group

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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.

 
Learn More
 

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.

Learn More
 

Thursday, August 11: Trach and Vent ALS Online Support Group

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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. 

Learn More
 

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.

Get Involved!
 

Tuesday, August 16: LGBTQIA+ ALS Online Support Group

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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.

Learn More
 

Tuesday, August 16: Living With ALS Under 50 Online Support Group

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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.

Learn More
 

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.

Camp Hope Loves Company
 

Wednesday, August 17: Español/Spanish Language ALS Online Support Group

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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.  

 
Learn More
 

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.

RSVP Today
 

Friday, August 19: Murrieta/Palm Springs Online Support Group

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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. 

 
Learn More and Register Today
 

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.

Learn More
 

*PLEASE JOIN US!* Wednesday, August 24: Fall Events Kick-Off

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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!

RSVP Today!
 

Wednesday, August 24: All-Hawaii Online Support Group

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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. 

Learn More
 

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.

Learn More
 

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!

Visit Our 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.

Find out More
 

Saturday, September 17: Central Coast Ride and Rally to Defeat ALS

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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.

Find out More
 

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!


Find out More
 

Save the Date!

Walk-tober Starts Now: 2022 Walk to Defeat ALS events!

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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.

Saturday, 9/17 - Hawaii

Saturday, 10/15 - East Bay

Saturday, 10/1 - Monterey Bay

Saturday, 10/22 - Central Valley

Saturday, 10/8 - Kern County

Sunday, 10/23 - Inland Empire

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!

Walk to Defeat ALS
 

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.

Hike to Defeat ALS
 

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.

Run to Defeat ALS
 

Special Thanks

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Many Ways to Give!

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Care Services


 

Research

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  • Denali Therapeutics Inc. is hosting a new study to determine the safety, pharmacokinetics, and pharmacodynamics of their compound DNL34 in people with ALS. The Phase 1b clinical trial is a multicentered randomized placebo-controlled study, followed by an 18-month open-label extension, and is now actively enrolling at two California centers. For additional information including contacts for each site, please view details on ClinicalTrials.gov.

  • Cytokinetics is hosting the COURAGE-ALS study, which is currently recruiting participants to evaluate the efficacy and safety of an investigational drug, reldesemtiv, for amyotrophic lateral sclerosis (ALS). COURAGE-ALS is a phase 3 placebo-controlled clinical trial with the main goal of learning if taking reldesemtiv will slow the progression of ALS. COURAGE-ALS is recruiting at the following study sites in California. For more information about the study and to find out if you qualify, please click here.


 

Advocacy