A message from Matt Chaney
Advocacy brings us closer to treatments and cures for ALS
I have always loved music. My skill level on the guitar and vocals was minimal, but good enough to get others to join in, whether at a campfire or backyard barbecue. As a dad of two boys, I did spend a few years touring a preschool/kindergarten circuit, and did a damn good impersonation of Bob Dylan singing “This Old Man.”
I was playing my guitar at a friend’s party on an early evening in March 2000. Margaritas were the featured beverage, and I was nursing my first. So when I was unable to grip my guitar pick, I could not blame the tequila. This weakness in the muscles in my hand proved to be the first symptom, and I received a definitive diagnosis of ALS almost two years later in 2002. By then, I was 41 years old, and my sons were just nine and six.
I’m a people person and a problem solver. Activism is second-nature to me, and I devote myself to the causes I care about. Helping others helps me. I began my involvement with the Golden West Chapter by participating in all seven Northern California Walk to Defeat ALS events and have been a part of every Napa Valley Ride to Defeat ALS and Walk since its inception.
Given my diverse interests, I have been involved in many local and national efforts like Major League Baseball’s “4ALS” initiative with the San Francisco Giants; the California Tax Check off campaign, which raised over $600,000 for ALS research; as well as many youth community efforts including the Lafayette Little League “Runs for ALS” program. I served as a Chapter Board Member for several years and currently serve as an Advisory Trustee.
Participating in Chapter events and finding ways to make the world a better place is rewarding beyond measure. So, I was very touched when the Chapter honored me in 2016 with a special award for my determination and efforts in the areas of advocacy, fundraising, and public awareness.
ALS strikes hard and fast for most people. If there is one thing I can communicate to those who are facing the disease now, it is do not wait to implement tools to mitigate symptoms. Get ahead of the challenges by having the necessary resources and training in place before they are needed. You can learn a lot from Golden West Chapter Care Managers and support groups.
The Golden West Chapter’s mission is focused on three key areas: professional care services; global research; and important advocacy initiatives. We need all the ALS advocates we can get to raise awareness and generate funding that benefits the ALS community.
It's been more than 20 years since my first symptom, and I'm still here. I am in awe to be celebrating another year helping to advance the search for effective treatments and cures for ALS. I've seen far too many amazing people lost to this devastating disease, and their memories reinforce the preciousness of every day that I'm lucky enough to enjoy. Together as advocates, many of us have helped improve outcomes for the ALS community, and there is still much more that we will accomplish in the new year and years to come.
ALS has taken a lot away from my family and me - my ability to talk, ride my bike, take a walk, yell at the squirrels in my backyard, and so much more. But it has not taken away my hope nor my appreciation for this community. I appreciate you all for continuing to support people with ALS and their families by powering Golden West Chapter programs and services. If you have not yet participated in Chapter activities, I encourage you to get involved. It truly makes a difference.
I am deeply grateful for my family's love and support of me personally, and the issues that matter to me. It's so important for all of us in the ALS community to get involved and be an advocate for everyone touched by this disease. Never give up!
Advisory Trustee, Golden West Chapter
Napa Valley Ride to Defeat ALS and Walk Committee Member
Team Captain, Hot Dawg
Living with ALS since 2001
(Typed by toe on an iPad)
Here are three ways that you can advance the search for effective treatments and cures for ALS!