Last month, you couldn’t go online without seeing someone taking the ALS (Amyotrophic Lateral Sclerosis) Ice Bucket Challenge. The fundraising idea went viral, and as of September 12, 2014, over $112 million had been received collectively by the ALS national office and all 38 chapters across the United States.
The ALS Association is incredibly grateful for the outpouring of support from people around the world. We thank all of the Ice Bucket Challenge participants and for all of the donations to support the fight against this disease. The ALS Association has demonstrated a strong track record of keeping fundraising and administration costs low, and investments high in programs and services to fulfill our mission. The association is also proud to have received the highest ratings from Charity Navigator, Charity Watch, the Better Business Bureau and GuideStar.
About ALS
ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that slowly robs a once-healthy person of their ability to walk, speak, swallow and, eventually, breathe.
With no known cause or cure, a person can expect to live typically two to five years from the time of diagnosis. ALS has no racial, ethnic or socioeconomic boundaries — and in only 10 percent of cases is there a family history of ALS. Today, there are approximately 30,000 people in the U.S. living with ALS and 5,600 people are diagnosed each year in the country. At any given time, there are an estimated 450 families living with ALS in Oregon and S.W. Washington.
About the ALS Association Oregon and S.W. Washington Chapter
Since its inception in 2002, the local chapter of the ALS Association has been the central source of services and education for people with ALS, their families, caregivers and health care professionals in all of Oregon and the six counties of Southwest Washington. The progression of ALS varies significantly from one person to another. Responding to each person’s individual needs, this local chapter is available to provide vital services and reliable information.
The mission of the ALS Association is leading the fight to treat and cure ALS through global research and nationwide advocacy, while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. The ALS Association Oregon and S.W. Washington Chapter receives no government or insurance funding. Their mission is funded solely by the community at large.
A sampling of the what the chapter offers
On-staff care services coordinators
Medical equipment loan program
Alternative communication and assistive technology program
Monthly support groups
In-home caregiving program
Respite care program
Children’s resources
ALS multidisciplinary clinics
Outreach and education to local medical community
Public policy
Research
Making a difference
“My husband Harper was diagnosed with ALS in 2009 at the young age of 38. I was eight months pregnant with our first child. We were thrilled to be welcoming our daughter, Nari, into the world, but all of the joy and happiness couldn’t bring back Harper’s declining strength. He wasn’t even able to carry our newborn daughter out of the hospital, like so many proud fathers do. He lost his ability to walk just as Nari learned. As December 2011 came to a close, Harper’s journey with ALS was over.
“Our journey would have been extremely difficult without our remarkable friends and family. Without The ALS Association, our journey with ALS would have been impossible. The people at our local chapter welcomed us into their fold with open, sympathetic and realistic arms. We knew without a shadow of a doubt that we were not alone. They were our advocates. They were our therapists, our financial advisors, our medical advisors, our insurance agents, our cheerleaders and our confidants.
We all know that at this time, ALS is a terminal disease. But our family at the ALS Association gave us a different perspective on what the diagnosis could mean. They helped turn a dark, hopelessly short future into a reality of thanksgiving, love and empowerment.”
— Amie Bates
“It was fourteen years ago. I was in the prime of my life — working out each and every day. I had recently retired from a long and courageous career in the U.S. Army. I was looking forward to life’s next chapter. I began noticing weakness in my legs as I ran. In 2000, my world was rocked when I received a devastating diagnosis of ALS. At that time, there was no local resource for people with ALS. There were no support groups. There were no multidisciplinary ALS clinics. There was no community of support. I had a million questions and found very little help locally to answer them. Thankfully, I am still living with ALS today. I have a beautiful wife and daughter and most importantly, support from the ALS Association. The ALS Association has become the one-stop shop for people living with this disease.”
— Pete Parsons
“Fortunately, because of the ALS Association, no one ever has to take their journey with ALS alone. It not only affects the person who has the disease, but everyone around them.”
Ashley was living at home when her mom had the full-time responsibility of taking care of her dad. She saw how exhausting it was and it made her feel bad that she would be going away to school and unable to help. Thanks to the ALS Association, by the time she was to leave for college, her mom had a professional caregiver coming in six hours a week. It made her feel better knowing that her mom didn’t have to do it all on her own.
Jordan enjoys playing the violin and participating in theater. Since her dad cannot be left alone and it is no easy task to take him out, her mom was wondering how Jordan would be able to continue with her violin lessons and theater. Thanks to the caregiver that the ALS Association provides, her mom can leave the house to take Jordan to her lessons and know that her dad is in good hands.
ALS affects the whole family and there is no way to avoid that, but having a caregiver can lessen the stress on those we love. Having caregiving help give families freedom, so they are not confined by the disease and can continue having a life outside of ALS.
—Jhaveri Family
To learn more about The ALS Association Oregon and SW Washington Chapter,please visit www.alsa-or.org.