Often referred to as Lou Gehrig’s disease (though the most familiar face with it is Stephen Hawking), amyotrophic lateral sclerosis (ALS) is a progressive neuromuscular disease in which patients lose the ability to walk, speak, swallow, and breathe.
Although Stephen Hawking has lived with ALS for decades, in most cases patients die within 3 to 5 years of diagnosis.
Last weekend (July 26 & 27) 230 riders from families and friends of those who have or had ALS cycled around Skagit County in the ALS DoubleDay to promote awareness about the disease. This ride benefits the Evergreen Chapter of the ALS Association, which has won “best chapter” 2 years in a row. Our local chapter’s services include support groups, equipment loans, speech augmentation devices, respite care, home visits, and even serves to facilitate the sale of wheelchair-friendly vans.
Although my family has suffered two recent losses to this disease, (and if it’s genetic I may very well be the next in line) I wasn’t accompanied by any of my family members, so I cycled with team “Grick,” which consisted of friends and family of Dick “Grick” Burwell. It was wonderful to spend the weekend cycling and hanging out with the extended Burwell clan, and inspiring to see how they have rallied in memory of “Grick.”
The ride itself was a total contrast to the previous weekend’s exertion at the Race Across Oregon: Families and friends are the focus of this charity ride. 85 miles spread out over two days might sound relatively easy if you are a cycling addict, but once I started pedaling I realized what a monumental undertaking such a ride is for most folks. Huzzah to everyone who completed both days, especially on Sunday rainy Sunday!
Throughout the ride, wrenches from Gregg’s worked hard to keep everyone rolling. Hopefully Gregg’s will continue to support this great charity.
Saturday evening we attended a pasta dinner event MC’d by former KIRO radio news voice Val Stouffer. The dinner event included brief introductions to the participating family & friends teams, some fundraising awards and a raffle that disseminated lots of great swag.
The evening’s highlights were the introductions to the family & friends teams. Two stood out:
Melissa Erickson is a twenty-something UW grad who up until her diagnosis was playing professional basketball in Europe. Melissa is confined to a wheelchair and her speech is slightly slurred. Her supporters included the buffest group of women you have ever seen–tall and athletic. As one of her team members said to the group: “It seems like only nice people get this disease.”
The Jones family has experienced 9 ALS-related deaths. The team captain introducing her team announced that she had recently been diagnosed with ALS herself. Needless to say, everyone in the room felt stunned.
To date, the ride has raised about $132,000.
Many thanks to my supporters who contributed a total of $1,690. Know that the Evergreen Chapter of the ALS Association is going to use your donations to ease the lives of ALS patients and their families.