ALS Ice Bucket Challenge Progress
For Immediate Release
Contact: Jenica Lancy
Director of Communications
(415) 967-2572
media@alsagoldenwest.org
The Golden West Chapter of The ALS Association hosts the 21st Annual Greater LA Walk to Defeat ALS on Sunday, November 6, 2022 at Exposition Park in Los Angeles. The scenic walk around the iconic Los Angeles Memorial Coliseum, and other Los Angeles treasures, is open to the public. Check-in will begin at 9:00 am, followed by an opening program at 10:30 am with guest emcee, Elex Michaelson, from Fox 11. This annual event brings incredible energy and an outpouring of support for those affected by ALS in Greater Los Angeles County and its surrounding areas.
Participants are invited to join other members of the community for a family-friendly morning of celebration, education, awareness, food, and kids’ fun, filled with activities provided by Lucky Strike and the Natural History Museum of Los Angeles County. Musical entertainment will be by the Ukulele Orchestra of the Western Hemisphere, California Lutheran University Dance Team and local artists, Sun Canyon Band. Those unable to attend in person at Exposition Park in Los Angeles, can experience festivities the day of the event by tuning in to the LIVESTREAM at the Golden West Chapter’s website, with support from our Accessibility and Inclusivity Sponsor, Mitsubishi Tanabe Pharma America.
Amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s Disease), is a fatal, neurodegenerative illness that attacks nerve cells in the brain and spinal cord. The average life expectancy of a person with ALS is two to five years from diagnosis. People with ALS lose their ability to move, speak, swallow and eventually the ability to breathe, while all five senses continue to function normally. ALS strikes women and men of all ages, and knows no racial, ethnic, or socioeconomic boundaries. Those who have served in the military and veterans are approximately twice as likely to develop ALS as the general population. In the later stages of the disease, the annual costs for home care, coupled with the cost of necessary equipment can exceed $200,000 per year. At this time, there are no known cures for ALS.
“My husband, Chris, was diagnosed with ALS in October of 2021,” shared Beth Ann Gee of Oak Park. “Chris was an avid bike rider, Disney Tri-Team member, and camera operator for Disney Feature Animation for 30 years. Now, he has lost most mobility in his hands and feet. It has been a difficult journey learning to navigate the challenges of ALS, during the pandemic no less. But we couldn't do it without the Golden West Chapter, and our family, and friends help! That is why we formed ‘Team Super Bike Man’ for the 2022 Greater Los Angeles Walk to Defeat ALS. We are walking to support a cause that will help other ALS families in their journey too.”
The Greater LA Walk to Defeat ALS plays an important role in the Golden West Chapter’s efforts to increase direct services and support to those living with the disease, their families, and caregivers throughout the Los Angeles area. This proactive model of care is provided at no charge, is proven to extend length and quality of life for those living with ALS, and is designed to advance the search for treatments and cures. The Chapter works every day to support people with ALS and their families, including individuals who have served in the military, who have a greater chance of developing ALS than those who have not served.
Joy Aronson, co-chair of this year’s Greater LA Walk to Defeat ALS has been walking for 15 years as co-captain of Team Milly. “Team Milly was formed in memory of my mom, Milly Kalmus, a woman full of life and love, a woman with a wonderful sense of humor. We walk because we can, we walk to advocate for all those who no longer can, we walk so that one day we can live in a world without ALS.”
“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. “We look forward to gathering together again IN PERSON this year. The reason ‘Why’ we Walk to Defeat ALS remains the same as always - care, cures, and community.”
“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,” said Garfinkel. “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.”
This year at the event, the Golden West Chapter will also offer a new Resource Fair, which will connect people with ALS and their loved ones with experts in ALS care, research, and advocacy. Durable medical equipment and professional service companies such as Numotion, Team Select Home Care, Superior Mobility, and Southern California Caregiving will be on site to demonstrate wheelchairs and associated services. Pharmaceutical companies such as Accessibility and Inclusivity sponsor, Mitsubishi Tanabe Pharma America, and Amylyx will be present to answer questions about their recently approved ALS treatments.
The FDA approval for Amylyx’s new therapy, Relyvrio (AMX0035) was just announced on 09/29/22 and the drug’s development was supported, in part, by ALS Association funding and advocacy. The Golden West Chapter recognized the company with its 2021 Commitment to Cures Award for their efforts to champion drug discovery and development in the relentless pursuit of treatments and cures for people with ALS and related diseases.
For more information about ALS and how you can help, please visit www.alsagoldenwest.org. For additional details about the event, or to register free-of-charge, please visit www.GLAWalktoDefeatALS.org. You can also contact Jessica Brandon, Assistant Director of Community Outreach, Southern California at 415-935-3484 or jbrandon@alsagoldenwest.org.
About The ALS Association Golden West Chapter
The mission of the Golden West Chapter of The ALS Association is to discover treatments and cures for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. The Golden West Chapter serves people with ALS and their families in the entire state of Hawaii and 31 California counties. Everything we do advances the search for effective treatments and cures for ALS. The Golden West Chapter is proud to have earned a Four-Star rating from Charity Navigator, America’s largest independent charity evaluator - for the ninth consecutive year! This is the highest rating possible in recognition of our ongoing commitment to sound fiscal management, accountability and transparency. Only 5% of the charitable organizations rated receive this exceptional distinction four or more years in a row.
For Immediate Release
Contact: Jenica Lancy
Director of Communications
(415) 967-2572
media@alsagoldenwest.org
The Golden West Chapter of The ALS Association hosts the 21st Annual Greater LA Walk to Defeat ALS on Sunday, November 6, 2022 at Exposition Park in Los Angeles. The scenic walk around the iconic Los Angeles Memorial Coliseum, and other Los Angeles treasures, is open to the public. Check-in will begin at 9:00 am, followed by an opening program at 10:30 am with guest emcee, Elex Michaelson, from Fox 11. This annual event brings incredible energy and an outpouring of support for those affected by ALS in Greater Los Angeles County and its surrounding areas.
Participants are invited to join other members of the community for a family-friendly morning of celebration, education, awareness, food, and kids’ fun, filled with activities provided by Lucky Strike and the Natural History Museum of Los Angeles County. Musical entertainment will be by the Ukulele Orchestra of the Western Hemisphere, California Lutheran University Dance Team and local artists, Sun Canyon Band. Those unable to attend in person at Exposition Park in Los Angeles, can experience festivities the day of the event by tuning in to the LIVESTREAM at the Golden West Chapter’s website, with support from our Accessibility and Inclusivity Sponsor, Mitsubishi Tanabe Pharma America.
Amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s Disease), is a fatal, neurodegenerative illness that attacks nerve cells in the brain and spinal cord. The average life expectancy of a person with ALS is two to five years from diagnosis. People with ALS lose their ability to move, speak, swallow and eventually the ability to breathe, while all five senses continue to function normally. ALS strikes women and men of all ages, and knows no racial, ethnic, or socioeconomic boundaries. Those who have served in the military and veterans are approximately twice as likely to develop ALS as the general population. In the later stages of the disease, the annual costs for home care, coupled with the cost of necessary equipment can exceed $200,000 per year. At this time, there are no known cures for ALS.
“My husband, Chris, was diagnosed with ALS in October of 2021,” shared Beth Ann Gee of Oak Park. “Chris was an avid bike rider, Disney Tri-Team member, and camera operator for Disney Feature Animation for 30 years. Now, he has lost most mobility in his hands and feet. It has been a difficult journey learning to navigate the challenges of ALS, during the pandemic no less. But we couldn't do it without the Golden West Chapter, and our family, and friends help! That is why we formed ‘Team Super Bike Man’ for the 2022 Greater Los Angeles Walk to Defeat ALS. We are walking to support a cause that will help other ALS families in their journey too.”
The Greater LA Walk to Defeat ALS plays an important role in the Golden West Chapter’s efforts to increase direct services and support to those living with the disease, their families, and caregivers throughout the Los Angeles area. This proactive model of care is provided at no charge, is proven to extend length and quality of life for those living with ALS, and is designed to advance the search for treatments and cures. The Chapter works every day to support people with ALS and their families, including individuals who have served in the military, who have a greater chance of developing ALS than those who have not served.
Joy Aronson, co-chair of this year’s Greater LA Walk to Defeat ALS has been walking for 15 years as co-captain of Team Milly. “Team Milly was formed in memory of my mom, Milly Kalmus, a woman full of life and love, a woman with a wonderful sense of humor. We walk because we can, we walk to advocate for all those who no longer can, we walk so that one day we can live in a world without ALS.”
“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. “We look forward to gathering together again IN PERSON this year. The reason ‘Why’ we Walk to Defeat ALS remains the same as always - care, cures, and community.”
“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,” said Garfinkel. “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.”
This year at the event, the Golden West Chapter will also offer a new Resource Fair, which will connect people with ALS and their loved ones with experts in ALS care, research, and advocacy. Durable medical equipment and professional service companies such as Numotion, Team Select Home Care, Superior Mobility, and Southern California Caregiving will be on site to demonstrate wheelchairs and associated services. Pharmaceutical companies such as Accessibility and Inclusivity sponsor, Mitsubishi Tanabe Pharma America, and Amylyx will be present to answer questions about their recently approved ALS treatments.
The FDA approval for Amylyx’s new therapy, Relyvrio (AMX0035) was just announced on 09/29/22 and the drug’s development was supported, in part, by ALS Association funding and advocacy. The Golden West Chapter recognized the company with its 2021 Commitment to Cures Award for their efforts to champion drug discovery and development in the relentless pursuit of treatments and cures for people with ALS and related diseases.
For more information about ALS and how you can help, please visit www.alsagoldenwest.org. For additional details about the event, or to register free-of-charge, please visit www.GLAWalktoDefeatALS.org. You can also contact Jessica Brandon, Assistant Director of Community Outreach, Southern California at 415-935-3484 or jbrandon@alsagoldenwest.org.
About The ALS Association Golden West Chapter
The mission of the Golden West Chapter of The ALS Association is to discover treatments and cures for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. The Golden West Chapter serves people with ALS and their families in the entire state of Hawaii and 31 California counties. Everything we do advances the search for effective treatments and cures for ALS. The Golden West Chapter is proud to have earned a Four-Star rating from Charity Navigator, America’s largest independent charity evaluator - for the ninth consecutive year! This is the highest rating possible in recognition of our ongoing commitment to sound fiscal management, accountability and transparency. Only 5% of the charitable organizations rated receive this exceptional distinction four or more years in a row.
