It is with a heavy heart that we share the sad news that Matt Chaney, Chapter Advisory Trustee and our dear friend, died on November 11, 2022, after a twenty-two year battle with ALS.
The family is overwhelmed by the love and support they are receiving. In lieu of flowers, please consider donating to the Golden West Chapter in honor of Matt.
Below is a message that Matt sent earlier this year.
I have a Good news—Bad news situation that I’d like to share. The good news comes first, because the bad news can be summarized in just a few words and this may be one of the last letters I, “Type by toe on an iPad”.
The Good News
I am extremely tardy this year on my annual letter about the upcoming 18th annual Napa Valley Ride to Defeat ALS on September 24, 2022. Since the rise of COVID, the Napa Ride has been held virtually (2020 & 2021). This year it will be A LIVE EVENT!! We are very excited about seeing Team Hot Dawg and all the other teams, volunteers and Golden West Chapter (GWC) staff back in Napa for the largest ALS cycling event in the country. Please join us as a member of Team Hot Dawg (or any other team), a solo participant, volunteer, sponsor, donor or fundraiser. You can also participate as a Virtual Rider, if you’re unable to be with us in Napa. More specific information about the Napa Valley Ride to Defeat ALS can be found by using the links at the bottom of this page.
Another bit of good news is — — that my patience has finally paid off! I recently received a new speech generating device (SGD) that uses eyegaze technology, with the Apple iOS platform, on an iPad. The TobiiDynavox, TD Pilot, was just released in February this year. I had to complete a 3-month trial to satisfy the insurance provider’s criteria, to make sure this system will work for me. The trial ended and IT WORKS!! One of the more life-altering “symptoms” of ALS, is losing the ability to speak. Communication, in some way, shape or form, is critical to an ALS patient’s survival. I have used almost every body part, from head to toe, to communicate with anyone willing to guess what I’m trying to say. As the disease progresses, it becomes more necessary to utilize the eyes for a quicker and more efficient means of being understood. A person with ALS (pALS) can be kept alive for decades by using invasive (tracheostomy) and in some cases, noninvasive ventilation. Our eyes are typically fully functional throughout the course of the progression. Using my eyes to navigate through communication apps, emailing, texting, word processing, spreadsheets and researching on the internet, is not as fast as using my toe, but it’s not the highest hurdle I’ve encountered on this journey.
The Bad News
ALS STILL SUCKS! That’s the short of it. There is still no known cause for sporadic ALS and no effective treatment or cure.
Back to some more good news, because I’m not going to end this letter with bad news. There are several hopeful projects that are in various phases of trials and studies, and research remains robust due to the focused commitment of the ALS Association (ALSA) and the Golden West Chapter The ALS Association is providing funding for 155 active projects in 12 countries around the world, representing a current commitment of $52 million. The ALS Association has invested $116 million in ALS research since the 2014 ALS Ice Bucket Challenge. The Golden West Chapter hosted the 12th annual California ALS Research Summit, bringing together world renowned researchers, investigators, clinicians, biotech companies, government representatives, and advocates in ALS and related fields. The outcomes of their efforts are presented to the public at their online educational “Ask Me” event.
Research is just one aspect of the GWC and ALSA’s three program approach to assisting pALS and their families. Equally important are the Care Services and Advocacy programs. More than 1800 people with ALS and their loved ones were served by the Golden West Chapter in 31 counties throughout California and the entire state of Hawaii. They also provided 714 grants to people with ALS for durable medical/communication equipment needs, transportation support, emergency assistance, and respite care, throughout California and Hawaii. Through the Advocacy program, the GWC works tirelessly and assertively, with the states’ and national legislatures/agencies, to ensure that funding, as well as policy decisions, are directed towards ridding the world of this horrific disease. Your support makes a difference. It is only together that we will defeat ALS!
Please consider a donation to the GWC by using the link below. There is no donation too big or too small. Thank you for your time and continued support.
(Typed by toe on an iPad)
What is ALS?
Often referred to as Lou Gehrig's disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of it's ability to walk, speak, swallow and breathe.
1. The life expectancy of an ALS patient averages two to five years from the time of diagnosis.
2. Every 90 minutes someone in this country is diagnosed with ALS, and every 90 minutes another person will lose their battle against this disease.
3. ALS can strike anyone. Presently there is no known cause of the disease. Someone you know or love may die from ALS unless a cure is found.
4. Caring for a loved one with ALS costs on average of $200,000 each year.