April, 2021
ALS Land is full of organizations and people who fight against this wretched disease. This advocacy takes many forms, from lobbying electeds to helping pALS. As a former attorney I appreciate good advocacy so let me introduce you to this inspired ecosystem.
The lead national organization is the ALS Association. I think it was the major beneficiary of the Ice Bucket Challenge. Its latest success was eliminating the five month delay in receiving SSDI benefits. In certain campaigns it will provide pre-written letters to send to your favorite representative. It also funds basic research into new therapies.
Regional concerns are handled by the Golden West Chapter in our case. In addition to legislative advocacy, it provides a wide variety of services to pALS and their families and caregivers. These include coordinating equipment loans, providing support groups, and my favorite, a case manager to insure the Chapter’s services are made available. It also funds research and seminars to advance care for us pALS. Give them all of your money.
There are an amazing goup of organizations founded by pALS and their families, from research institutions to aid providers. The sports world has been an incredible contributor. For example, the group that pushed Major League Baseball to start a Lou Gehrig’s Day raises money to further research into ALS biomarkers. Team Gleason, founded by NFL player Steve Gleason after his diagnosis of ALS, raises funds for projects easing the journey of pALS and their families. The list goes on, thank goodness.
Then there are the many pALS who through their example spread awareness of the disease and how much life you can still live. I’m reminded of Dr. Stephen Hawking the noted physicist. There’s local legend Charlie Wedermeyer who coached championship high school football while living with ALS. These two actually hung out together at Hawking’s house. There are so many more examples of pALS who won’t let the disease stop them.
I think spreading awareness of this wretched disease comes with the territory. Loyal readers will remember my adventures at the Stanford Health Resort in the post titled, you guessed it, The Stanford Health Resort. After that debacle I sent a copy of the post attached to a complaint letter written by St. Laurel. When the response illustrated a flawed investigation, I wrote a follow up letter laying it all out for them. We recently received their response where they stepped up to their error and noted they have changed their admission procedures for pALS. Chalk one up for the home team.
Emboldened by Stanford and inspired by the good groups above, I’ll have to think about how I can do my part to spread awareness of this wretched disease. Maybe I’ll start a blog.
See you next time.
Embrace The Suck 
Bob, thanks for another insightful post…really appreciated understanding at least a little bit more about why I dumped an ice chest of water on my head a few years back…looking forward to our next chat!
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Yes, you are already spreading awareness and advocating with your informative, well written and always cleverly humorous blog. I so appreciate receiving these and also so appreciate your wisdom, commitment, perseverance, enlightened attitude and, as always, unique sense of humor and friendship. Rick and I love you and Laurel, you know that!
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And when does your book hit the shelves? Seriously, I think a book incorporating material from your blog would be quite popular and change many lives. Your writing definitely belongs in a hardback version as well the electronic one.
P.s. My preschool grandchildren are still dancing regularly to the music from your recent post about life on the stage. It inspired many backyard performances with their toy pianos. The bonus is that I really like the music too. Your blog is a gift in so many ways….
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I agree with Karen Norton. You’re already writing the book, and it would be enormously helpful to people. I’ve learned so much about this wretched disease from you, and you’re able to talk about with such grace and humor that I look forward to your posts–the way people reading your book will look forward to the next page. So thank you, again.
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Hi -so it sounds like you found your
Case Manager after you found the
Golden West Chapter. Seems you made
That discovery on your own too if I recall early days of searching for a case
Manager. Then I’m glad there is a C.M.
The documentation of your journey is so insightful. Glad you gave a retort to
Clarify your experience at Stanford.
Keep providing that lawyerly clarification of the Facts!! 😊🌷Marie
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