First published in the Oct. 22 print issue of the South Pasadena Review.
For the first time ever, the Golden West Chapter of the ALS Association is hosting a chapter-wide virtual Walk to Defeat ALS. On Saturday, Oct. 23, people throughout the chapter’s service area in California and Hawaii (and beyond) will join together virtually to raise ALS awareness and funds in support of over 1,800 families facing ALS served by the Golden West Chapter.
The public is invited to join this community gathering for a family-friendly day in celebration of people living with ALS and their loved ones and in memory of those lost to this devastating disease.
Amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease, is a fatal, neurodegenerative disease that attacks nerve cells in the brain and spinal cord. ALS is not contagious and does not discriminate — it affects men and women of all ages, ethnic backgrounds and socioeconomic communities around the world. For unknown reasons, military veterans are diagnosed with ALS nearly twice as often as the general population. People with ALS lose their ability to move, speak, swallow — and eventually the ability to breathe — while all five senses typically continue to function normally. The average life expectancy of a person with ALS is two to five years from diagnosis. At this time, there is no known cure.
“My husband, David Jordan, who was always very vibrant and fit, was suddenly diagnosed with ALS,” said his wife, Eve. “Within weeks, the Golden West Chapter was in touch with us and never let go. David was a passionate teacher but only had one finger left to operate his computer. The chapter provided the technology for him to finish the semester.
“David met each daily challenge with humor and courage,” Eve continued. “He lost his battle with the disease, but the war continues for all of those living today and yet to be diagnosed. Donating to the Golden West Chapter will help families facing ALS each day to receive much-needed information about the latest research to find treatments and cures, access to equipment, referrals, and emotional support for the endless needs navigating through this relentless progressive disease.”
“The Golden West Chapter’s Walks to Defeat ALS events are the largest annual gathering of our ALS community,” said Asher Garfinkel, vice president of Community Outreach. “Where and how we gather together may have changed this year, but why we Walk to Defeat ALS remains the same. We walk for care, cures, and community.”
Registration is free and links to the “live Zoom start line” will be distributed to all registered participants. Starting at 11 a.m., there will be a Zoom start line featuring special musical guest Adam Chester, often referred to as the “Surrogate Elton John.” Then, guests will watch a fun and interactive program celebrating people with ALS and their families hosted by longtime chapter supporter Elex Michaelson from Fox 11 News.
Sponsors include Cytokinetics, Booz-Allen-Hamilton, and Team Select Home Care. National sponsors of the Walk to Defeat ALS program include the Numotion Foundation, Mitsubishi Tanabe Pharma America and Permobil Foundation.
“Because of the funds and awareness we raise through the Walk to Defeat ALS, we are able to ensure the ALS community is well-supported by our wraparound model of care, which extends length and quality of life, while we search for effective treatments and cures,” Garfinkel said. “Throughout the year, we partner with families, researchers, clinicians, the government, corporations, other organizations, and the media to raise ALS awareness and support. The Walk to Defeat ALS anchors and helps to power these collaborative efforts.
“Please join us from wherever you are Saturday, Oct. 23, to help ensure that no one is alone when facing this devastating disease. It is only together that we will defeat ALS.”
“The mission of the Golden West Chapter of the ALS Association is to discover effective treatments and cures for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest,” the organization said in a statement. “The Golden West Chapter serves people with ALS and their families in 31 counties throughout California and in the state of Hawaii. Everything we do advances the search for effective treatments and cures for ALS. The chapter partners with and supports multidisciplinary ALS centers and clinics. We provide compassionate care services to families facing ALS — free of charge — which include professional, regional care managers to help families facing ALS access the best information, resources, equipment to maintain and maximize health, independence, communication, mobility, safety and quality of life. We also offer support groups providing practical solutions for everyday challenges and a connection with others living with ALS.”
All proceeds from the Golden West Chapter’s Walk to Defeat ALS will provide critical funding for its urgent, interdependent mission priorities in ALS care services, public policy initiatives, and cutting-edge global research.
To register or make a gift to defeat ALS visit WALK-tober.org.