It's been 10 years since Harper passed. A lot has changed in 10 years and yet many things have stayed the same. Unfortunately, one thing that has not changed is that there still is no significant treatment or cure for ALS despite the diligent efforts of researchers. Everyday someone loses their loved one to ALS. Until this stops, I don't consider our job with advocacy and fundraising complete.
So let’s raise some money, put on those red wigs, and walk in honor of Harper Bates!
Portland Metro Walk
Sunday, September 29, 2019
Walk Starts: 12:00 PM
Team Red Wig meets on the corner of SW Salmon St and SW 1st Ave.
Team attire: a red wig
I'll have sunblock for all of us red heads.
Go Red Wigs! Amie
Did you know...
ALS is a fatal degenerative neurological disease. Imagine not being able to scratch an itch, feed yourself, walk to the bathroom, go to work, say "I love you," or breath. This is what ALS does. 10% of ALS diagnoses are familial cases and 90% are sporadic. This means 9 times out of 10 it can happen to anyone regardless of age, ethnicity, socio-economic status, or plans for the future. Even though it is diagnosed as frequently as MS, ALS is considered a rare disease. This is because the fatality rate is so high (prognosis of 2-5 years to live from time of diagnosis) there is a limited population alive at a given time. Because of this, pharmaceutical companies do not consider ALS a profitable disease to allocate significant efforts towards researching cures or even treatments. Rest assure that a portion of all donations to The ALS Association Oregon and SW Washington Chapter go directly towards researching a treatment and cure. Other portions go towards the extensive care for people living with ALS. A person with ALS eventually needs care 24 hours a day not to mention access to expensive machines, medications and therapies. The financial burden that accompanies this disease is an annual average of $200,000 for basic care. It is easy to feel isolated and beaten by this disease. But the ALSA of SW Washington and Oregon show patients with ALS, their families and friends that they are never alone with resources such as support groups, durable equipment loan closet, respite care, medicare/medicaid guidance, and so much more.
Thank you for joining us on this website. Together we can be a part of the efforts that end this terrible disease.