ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Saturday, August 5, 2017

Expressing Gratitude

It's not just good manners.  It's important.

Yesterday afternoon I listened to a NEALS webinar about a clinical trial.  A gentleman with ALS spoke about his personal experience in this and other trials.  Listeners received wonderful insights.  At one point he had advice for those in charge of the trials.  It's important to say, "Thank you."  Boy, is he ever right about that.

Every year I sit through a lot of ALS research presentations.  There is traditionally a slide at the end of the deck that thanks the funding agencies.  Seldom is there a slide that thanks the people who volunteered for the research.   It should really be the first one in the deck.

Earlier in the week I listened to two days of presentations that included ALS epidemiology studies funded by the CDC ALS Registry project.  Never did I see all those anonymous people who supplied data (often having to supply the same data multiple times in two or three different studies) specifically thanked for their contributions to a study.

There is a lot of angst over getting people with ALS to participate in clinical studies.  Perhaps researchers could simply stop calling their project volunteers "subjects" and start genuinely thanking them as the most important members of their project teams.

Last evening I was invited to a gathering that really drove this home.

There is a project, Hero's Journey Art, that Eli Lilly and Company has been developing.  People who have participated in clinical trials have been invited to submit wooden bricks decorated with whatever their thoughts are about participating in clinical research.  No rules.  No censorship. No coloring in the lines.  Just express yourself. I did my brick many months ago.  It wasn't hard for me.  Mine wasn't a graphic masterpiece, but it contained the words that made a clinical trial so important to Mom.

Last night one of the three sculptures was (literally) unveiled in a cancer support center in my city. There was a larger crowd than I expected.  There were lots of people who had participated in cancer trials.  It was a good reminder to me that there are a many evil diseases out there that still need so much research so that people, especially young people, can live.

When the sculpture was unveiled, the artist, John Magnan, told us a little about the journey and invited us all to look closely and even touch the sculpture.  And that's when this art touched me in a way I never expected.

People approached it, and as I did, looked for "their" bricks.  But they also looked for their friends' bricks.  And they looked at the messages on bricks of people they didn't know but who shared an unspoken bond of having participated clinical research.  The brick themes were all so different, yet they formed something cohesive about facing disease. It was captivating to meet over 300 important and diverse contributors to research via their bricks.

And a major pharmaceutical company was simply saying, "Thank you," in a remarkable way.

In the next year when I need a quiet moment to boost my faith in the fights against diseases, I'm lucky that I can stop by and soak in that sculpture.

Thank you to everyone who contributed to a clinical trial and told a story in a brick, and thanks, Lilly and John Magnan, for an important expression of gratitude.

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