It's been 6 years since Harper passed and we're still going strong. Everyday someone loses their loved one to ALS. Until this stops, I don't consider our job with advocacy and fundraising complete. Nari asked me recently if "they've found a cure for ALS yet." One of these days, thanks to your loving support, the answer will be yes. In fact, the FDA just approved the first new drug specifically for ALS in the past 22 years!! It's meant to slow down the physical progression of the disease. That's good news! The bad news is that it costs $11,000 for one month of treatment. On top of all the other costs needed to combat this disease (durable medical equipment, home modifications, medical treatments, loss of income, etc etc.), I'm not sure how accessible this new treatment is for the thousands of people who have this disease. With our help, more treatments will be researched and one of them will be the magic answer we've all been looking for.
So, go ahead join the fight this year, sign up, raise some money, and let's WALK TO DEFEAT ALS!
Portland Metro Walk
Sunday, September 24,2017
Walk Starts: 12:00 PM
Team Red Wig meets on the corner of SW Salmon St and SW 1st Ave.
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.