LAFAYETTE -- Matt Chaney was diagnosed with Lou Gehrig's disease in 2001.
For those with the disease, death often occurs between two and five years after diagnosis, as patients lose the ability to breathe and swallow. Formally
known as amyotrophic lateral sclerosis, or ALS, the disease destroys nerve cells, making voluntary movements increasingly difficult.
Eleven years later, Chaney has very little control of his arms and hands, and has trouble speaking. But he was still able to ride a custom-made bike 62 miles in the Ride to Defeat ALS on June 30 in Napa. As the leader of cycling team "Hot Dawg," Chaney helped raise more than $38,000, the most of any team in the event. Chaney is able to steer his lay-down tricycle by shifting his body, and can shift gears and apply the brakes using his knees.
As his disease has slowly progressed, Chaney has compensated for the loss of movement in his arms and hands by using his legs and feet for many activities.
Chaney is part of a close-knit group of fathers that live in Lafayette's Burton Valley who get together regularly and go on a yearly trip to Healdsburg. Chaney lives with his wife and two sons, Brian and Dylan.
A fierce competitor, Chaney hasn't lost his edge.
"Back in Matt's day he was a stud athlete, and unfortunately it didn't go away with ALS," joked Ken Kisner, a fellow Burton Valley father. "He still beats us in everything. He beats us in horseshoes now."
"With modifications, it works really well," said Chaney. "My son's football team had a golf tournament a month ago in Moraga and I made six of the first seven putts. One was a 40 foot, 1-foot-break putt."
When Chaney goes golfing now, he usually starts about 30 feet from the green.
"I watch and help people keep track of their balls, and then when we get within 30-feet of the green, I bring out my clubs."
One of their favorite games when Chaney and Kisner and make their yearly trip to Healdsburg with their friends is bocce ball. As Chaney's disease progressed, he could no longer roll a bocce ball with his arms. He had been dominating competition, and didn't want to give that up so easily. So Chaney put together a homemade "bocce boot."
"We couldn't beat him all weekend," said Kisner.
Chaney even used the bocce boot to fling the first pitch at an Oakland A's baseball game in 2010 -- he hit the catcher's mitt.
"It was more of a slow-pitch softball strike," said Chaney.
Chaney also writes emails using his toes to type on his iPad.
Currently, there is no cure for ALS, and the drugs on the market only target some of the severe side-effects of the disease, such as difficulty swallowing saliva.
As much as Chaney is able to still do, he is the first to admit that ALS is a nightmare and he devotes most of his free time to raising awareness and funds for a cure. He is on the board of directors for the Golden West Chapter of the ALS Association.
"ALS has been referred to as living in a glass coffin, you can see, but you can't move," he said. "Everything shuts down."
About eight years ago, Chaney got involved in marketing for the Golden West Chapter of the ALS Association. Before he retired in 2001, Chaney was a salesman for a chemical company, so he knows what it takes to get people's attention.
"When people asked me what I did for a living, I told them 'I sell acid,'" he joked. "I got involved in '04 because I no longer qualified for clinical trials,"
Because Chaney's ALS has progressed more slowly than average, drug companies worry that any improvement a drug might give him wouldn't show up as dramatically as it would in someone who is declining more rapidly. For this reason, drug companies often exclude slow-progressing patients from clinical trials.
"When I was no longer able to help out as a participant, I thought raising awareness and fundraising was something I might be able to help out in."
Chaney is now on the board of directors for the Golden West chapter, which includes 31 counties throughout California.
"I get to see a lot of the marketing campaigns come through my applications lab," said Kisner.
Kisner is the president of INX Digital, a leading global manufacturer of inkjet inks for digital printers. With the help of a friend's decal company, Kisner was able to donate all the banners and signs used at the Ride to Defeat ALS in June. He has an applications research lab in San Leandro, where he tests products and shows clients the capabilities of the ink. Since Chaney's diagnosis, Kisner has printed signs and banners at the applications lab for Als-related efforts and other good causes.
"Rather than printing stuff that we're throwing away, I try to print things for the community," said Kisner.
"Ken has been very generous doing banners, and signs and whatnot as in-kind donations," Chaney said.
Has their friendship been strengthened by Chaney's struggle with ALS?
"He doesn't treat me any nicer," joked Chaney.
"I don't think our relationship has changed," said Kisner. "The only difference is he's the only friend I'll pull up the zipper for."
Chaney still passes on his love for sports to youth around Lafayette. Chaney volunteers to help run a program at Burton Valley Elementary School called "Noon League," where fourth- and fifth-graders participate in team sports such as baseball, kickball and basketball during their lunch periods. To show their appreciation, the noon league students raised $2,341 to support Chaney's ALS fundraising bike ride this year.
Chaney also used to coach baseball and was a board member of the Lafayette Little League for many years. Chaney made such a big impact that Michael Bone, Tyler Ewing and Matty Vicencio decided to ask for donations to Chaney's ride instead of gifts on their 13th birthdays. Together, they raised more than $2,180 for ALS.