People who are perfectly healthy today can be slapped with an ALS diagnosis at any time. Welcome to the rookie camp you never wanted to join. Wham. It's a fast-moving nightmare and families scramble to become knowledgeable and find some ways to fight and cope. There is so much to learn and the downhill train is going fast. And it's often over in a few months.
The ALS Association had been promoting its June 21 "Virtual Listening Tour" for weeks. That's a nice concept -- for people in the ALS trenches to be heard. Many of us preregistered as instructed. A few hours before it was to start, I received an email that it was only for people with ALS and "current" caregivers. I did not join as a result. Later I got the link to the recording that I requested. And as I listened to the listening, the memory problem became so apparent.
There was a chippy exchange between ALSA officials and a young woman with ALS over the investment of the ALS Ice Bucket Challenge millions. The dying young woman spoke to urgency and boldness. ALSA representatives rigidly defended a deliberate, long-term approach to its windfall. The gap in perspective was huge (and I hope that there actually was "listening" amidst the defensive dialogue).
So what does this have to do with memories?
It has everything to do with institutional memories and public access to pertinent information. You see, people in the throes of ALS don't have the benefit of knowing a lot of ALS organizational and scientific history. Most everyone is a relative rookie and extremely busy.
Pertinent history and memories are continually lost in haystacks that are impossible for those rookies to search. There is no orderly place to go look for past scientific investments and outcomes. You constantly reach for information and get press releases and announcements. You peruse the obvious from the nearest haystack and simply don't have time to dig deeper. That's a terrible problem.People dealing with ALS need orderly access to research investment amounts, dates, recipients, project descriptions, and outcomes. Come to think of it, scientists and investors and donors and the organizations themselves could benefit from that history, too.
How are we to understand exactly where ALS Ice Bucket Challenge dollars have been spent or committed and projects' progress? We have uplifting press releases and tax returns and financial statements and PubMed searches, none of which tell the story clearly. If you have a rock-solid story to tell, please tell it transparently and continuously!
Neuroscience research is risky, but we should learn from every dime that was spent on ALS research 20 or 10 or 5 or 2 years ago or 2 weeks ago. We need searchable, accessible documentation to leverage the disappointments and the duds. We get nothing. I can't tell you how many times those of us with longer memories who hang around the fight wonder what ever happened to various "promising" or "exciting" research from the past. Information is a precious resource whether or not it is uplifting to review.
It's quite possible that no matter how slowly or quickly ALSA takes to spend the ice fortune that we won't get a successful therapy, but we had darned well better learn more than we get today from a very staged haystack.
And, oh my, dates and outcomes will shine light on those urgency gaps, too.
Every year since I can remember, I've heard how this is the most exciting time for ALS research. When I was a "current" caregiver 20 years ago, that made me feel good. Now that I have more memory, it makes me realize what a poor job we do at learning from the past in order to work smarter and faster for the future.
Is anyone willing to fix a very fixable memory problem?
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