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Personal Amount Raised:
Personal fundraising goal: $500.00
Help me defeat ALS!
Why I'm doing this and why Sailors Ski Too is our team name: I used to think ALS was rare, but I keep finding out about someone else's loved one who has either died from it or is currently living with it—Allan’s mother, Robin’s friend, John’s cousin, Michelle’s friend, Scott’s mother, two of Carol's friends, and I’ve known two people myself, so how could it be rare? It’s not! Those two people, Donnie and Keith, came into my life through the sailing community, so I’m appealing to sailors, skiers, and all ourintersecting communities to help make a difference together. By donating to my campaign you are making it possible for the ALS Association to continue helping those who need them now and, to eventually, to Defeat ALS!
Many in the Portland/Vancouver sailing community knew Donnie Graham and know his wife, Jan Steinbock--Sailors and Skiers both (well, Jan is a snowboarder but we love her anyway!). Donnie recently died after years of progressively losing the use of his body to ALS, and Jan was his stalwart companion and caretaker. Even when all he could do, physically, was move his eyes to operate his computer, Donnie had the desire to live and was able to find joy in what was available to him: family and faithful friends, views from accessible pathways in National Parks, his own tropical garden with a path for his wheelchair and certain plants and Christmas lights that Jan made sure he could see through the window, the people of the ALS Association with all the help, support, and equipment they provided, and much more. He was a real trooper, and so is Jan. I am thrilled to have her on my Sailors Ski Too team this year! Intermingled with her grief is a newfound freedom, and while dealing with all these emotions, she is working to "get her legs back" after years of never walking faster than the pace of an electric wheelchair: so she can Ski (I mean, Snowboard!) To Defeat ALS!
Keith Matteson was diagnosed with ALS about two years ago. Before ALS he was an avid skier and motorcycle rider, and when he and Jalene Case met (you may remember her as another past OWSA member), their shared kindness and adventurous spirit created a bond that has taken them far and wide. They actually rode their motorcycles together all the way from their home in Newport, Oregon to the very tip of South America. They gathered two years’ worth of wonderful memories on that trip and grew in ways that even ALS can't take away; now Keith's ride is a wheelchair. But their bond is strong and will see them through this rigorous adventure with the help of family, friends, and the ALS Association. Together they are learning to forge their own new pathways.
Join us in supporting the fight against ALS!
Help The ALS Association get closer to treatments and a cure. Please give a tax deductible donation towards one of our team members and/or join our team, Sailors Ski Too. The more, the merrier--we have eleven team members so far--and together, we will have an EPIC time on the slopes at Mt. Hood Meadows. We encourage you get your friends, family, neighbors and coworkers involved! Any amount helps and every dollar makes a difference
Following is more information provided by the ALS Association. As you can see, they provide direct support to people currently dealing with ALS and its aftermath as well as researching for better treatments and a cure:
Join me in supporting the fight against ALS!
Give a tax deductible donation towards my goal and help The ALS Association get us closer to treatments and a cure. Please know any amount helps and every dollar makes a difference. You may also join me by registering today and commit to your own personal fundraising effort. The more, the merrier, and together, we will have an EPIC time on the slopes at Mt. Hood Meadows.
I encourage you get your friends, family, neighbors and coworkers involved!
Why We Need Your Help
Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs a person of their ability to walk, speak, swallow and eventually breathe. The life expectancy of a person with ALS averages only 2 to 5 years from the time of diagnosis. In a very short period of time, the person and their family need a myriad of services and support. Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. This crippling disease can strike anyone.
Everything The ALS Association does advances the search for effective treatments and a cure. The ALS Association leads the way in global research, provides critical assistance for people with living ALS, coordinates multidisciplinary care through certified clinical care centers, and fosters government partnerships. All of these efforts must happen in an effort to defeat ALS!
Throughout the State of Oregon and the six counties of SW Washington, The ALS Association’s local chapter exists to provide critical programs and care services, free of charge, such as, but not limited to:
- On-staff Care Services Coordinators who offer individual support and home visits to assess needs, suggest equipment, connect with local resources and help families plan.
- ALS Association Certified Centers of Excellence and Clinic partnerships with Providence Brain & Spine Institute, Portland VA Health System, OHSU, Kaiser Permanente, St. Charles Health System, The Center and Asante Health System.
- Medical Equipment Program in partnership with Numotion and Norco Medical to loan equipment to aid in daily living activities and with mobility.
- Chapter Grant Program that funds a myriad of reimbursable, ALS-related expenses such as respite care, counseling, co-pays for healthcare costs, home modifications, and more.
- Monthly Support Group Program for people living with ALS, family members, and friends.
- Support and resources for children, in partnership with The Dougy Center, who have ALS in their families.
Help create change in the ALS community. Support my efforts or sign up to participate with me today!
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