Full text of Jeremy’s speech:
Thanks marc marc marc marc marc marc marc West in the house marc, you the man. Congratulations to us for sticking it out another year. Pause for applause. Pausing. Pausing. Pausing. Pausing.
Hello there my little friends . Y’all need to deal with my synthetic voice now. Please pay attention as words and meaning our often lost in translation.
I am in the habit of regularly checking the google for a l s news. So what is newsworthy in A L S world? The news can be grouped into 3 main categories.
1. Death. Obituary type stories of people who died from a l s. There is no shortage of these reports. People are dying left and right from this disease. It is a real downer of course to see the daily toll and as a fellow patient pretty dam scary. I use to read some of these stories, paying attention to their age and time of diagnosis, as part of a morbid calculation. I would read the glowing accounts of lives and the survivors. Now i don’t read these anymore. It is too difficult.
What can we make of all this suffering? We can’t absorb and really process it all. That is no way to live. I reckon the best response is to try and channel our energies into a constructive response. This brings me to the second category of a l s news.
2. Communities ralllying. Everyday there are a number of stories of communities ralllying around a stricken member. People walk, run, bike, dump buckets of ice water over their heads, to help. This pattern of behavior speaks to the good in humanity, compassion and willingness to contribute to something larger than themselves. You are an example and ought to be commended. It is a welcome antidote to the mainstream news. And slowly but surely it is making a difference. Whereas the pharmaceutical industry has shied away from the investment necessary to achieve a breakthrough, after all it is only a potential 38 million dollar market, the general public has stepped up. This brings me to the final category of A L S news :
3. Scientific advances and research breakthroughs. This is my favorite type of story. Nearly everyday there is some type of discovery or advancement. This is heartening. Powered by the ice bucket challenge and the 220 million it raised there was a study involving 80 researchers in 11 countries. the study looked at 15000 patients and they found that many of the subjects had something in common, a gene called N E K 1. This represents an important breakthrough in our ability to understand the disease and eventually develop targets for therapies. And what about the lab mice? They are already enjoying the fruits of the research. Many mice engineered to have A L S have experienced improvement as the result of experimental therapies. I’m so happy for these mice and their little mice families. Three weeks ago researchers at Brandeis were able to restore improved crawling ability to once paralyzed fruit flies. No, they couldn’t fly, but they could crawl better, and that is something for a fly. Pretty white guy for a fly.
Death. Communities ralllying. Science. Incremental progress. baby steps. Mice and fruit flies. West and Best.
I’m a betting man and I wouldn’t bet against science. It is the best time ever to have this disease. Thanks to improvements in symptom management and technology,, (shout out to Microsoft ), quality of life can be good. Steve Gleason said until there is a cure technology is the cure.
Now about this here walk. In the interests of increasing media interest and more revenue we have decided to make some changes.
TOP TEN CHANGES IN A L S WALK
10. Enhanced television coverage featuring wheelchair camera, graphics, ticker, and blimps all over the place.
Pause for laughter. Pause. Pausing. Pause.
9. $50000 prize for winner.
Pause for laughter. Pause. Pausing. Pause. Pause.
8. Bathing suit competition.
Pause. Pause. Pause. Pause.
7. Anyone seen planking will receive a hefty bonus. If you don’t know what planking is you better find out.
Pause for awkward silence. Pausing. Paws.
6. Mandatory drug testing.
5. Embracing corporate sponsorship. Like NASCAR, participants will be festooned with names of sponsors. I have signed a lucrative deal with AFLAC (aff lack), Marc with Pennzoil.
Pausing for uproarious laughter. Pausing. Paws. Cat paws.
4. Black participants will be subject to random stops and harassment. Sorry Marc.
Its ok to laugh. Pausing. Pause. Murka . Pause. OK Now Quiet.
3. Wheelchairs allowed to carry small arsenal of weaponry. This is not only tolerated but encouraged. Like Mad mAx Fury Road.
Pause. Pause. Pause. Hodoor.
2. Bonus for eliminating non A L S Walk Participants. Includes pedestrians, joggers, cyclists, and small animals.
Pause once more. Delaying tactic. Pause.
1. To honor their sacrifice each participant will carry a live mouse and fruit fly. Must also have corporate logo.
Woooooooooo . Woooooooooo . Woooooooooo .
Enjoy the walk everybody. On this fine day. Thank you and good night.
One thought on “Jeremy’s Speech at the 2016 ALS Walk”
Hi Jeremy: I’m a writer doing a story on the UW team that is developing My Visual Piano.
Wondering if you might comment on this app, if possible?
Mary Lynn Lyke