June 27, 2012
[EDITOR'S NOTE: We received this email back in October, and couldn't pass up the opportunity. If you are looking for a nice ride on July 14, come join us in Mt Angel!]
My name is John Schaffers and I am a long time Bike Friday owner.Â
I won my first Bike Friday during the 8th Annual Cycle Oregon bike ride. My second Friday was built to accommodate self supported tours around the west.
Just last month, I traveled the Wallowa Rambler route — Baker City to Joseph to Baker City — 7 nights of camping, all needs stored in panniers on my Friday.
A picture of my Friday at the Blue Banana in Lostine is [above].
Other trips (all successfully completed with my Friday) have included the Pacific Coast, Glacier and Waterton parks, and Teton and Yellowstone Parks.Â If all goes well, a cross country trip with my Friday is possible soon.
I am writing to ask for your support for something that is even closer to my heart than my Friday.Â I am on the committee to support the inaugural Ride to Defeat ALS event here in Oregon. This will be a charity cycling event where all proceeds support the fight against Lou Gehrigâ€™s disease (ALS).
To learn more about this event, please visit our website.
As you may already know, ALS is a progressive neurological disease that currently has no known cause, no known treatment, and no known cure.Â Average life expectancy is 2-5 years and for most, it comes out the blue and is totally random.
Sadly, for my family, it is not random. We have a long history with this disease. My dad, one of my sisters and four cousins have all passed away from this disease; and currently, another sister is suffering from it. Funds raised by this event support local care services for families struggling and learning to live with this disease as well as nationwide advocacy efforts and international research efforts.
The ALS Association Oregon and SW Washington Chapter is hosting this event and they are the only not-for-profit organization solely dedicated to ALS.
When my Dad experienced this horrible disease 30 years ago, my mother was the sole care giver with help from the family. There was no identifiable cause of the disease and no drugs were available. Only one national organization had a focus of finding a cure.Â Local support for the patient, care givers and family did not exist.
Ten years later, my mother again took care of my sister when she received the diagnosis. There was still no identifiable cause and no drugs were available. However, she had a hospital bed delivered by County Health, oxygen to help breathing, and a power wheelchair to travel around the neighborhood.Â Local support for the patient, care givers and family still did not exist.
Now, another sister is suffering from ALS and her husband is the primary care giver. Fred has help four days a week, which allows him to play golf and take care of chores.
Therese has food delivered to their house, and is taking experimental drugs. The local chapter of The ALS Association makes sure that they know about potential drugs, and the primary care giver gets relief. They offer support groups and resources to keep quality of life up to par for as long as possible.
Our family appreciates this but we need more to be done. We need to find the cause, a treatment and ultimately, the cure. We need to enhance the support systems in place. We need hope.
With your help, we can get one step closer.
I truly appreciate your time and consideration.
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