Jan Geissler, Founder and CEO at Patvocates, shared a post on LinkedIn:
“Sometimes there are wonderful moments of flashbacks, like the one this week. Pretty exactly 22 years ago, I attended my first international advocacy meeting ever. Just 1.5 years after my diagnosis with leukemia, in 2003, just after I set up my German online platform to share what was going on in science.
I was only 29 when Novartis invited me for ‘New Horizons in CML and GIST‘ to Diessenhofen to meet grassroots advocates like me — people that had set up patient organisations to share what was going on in research. Early data of a new experimental drug was giving hope on our lethal CML and GIST. In 2003, being on a phase I/II study, I wasn’t sure whether I would make it through the next 2 years. I was in first remission but not sure how long that dream would last. However I was curious, passionate, and wanted to give back while I still had the chance.
This was the first time I met e.g. Giora Sharf, Pat Garcia-Gonzalez, Zavie Miller, Kathy Redmond, Norman Scherzer and David Palacios, amongst a group of amazing people who shared a passion to do something about all this. Zavie, who I only knew from US-based forums and mistakenly thought he was a woman, published ‘Zavie’s Zero Club‘, a worldwide list celebrating everyone who achieved a remission on STI571 (later known as Imatinib/Glivec) — still unthinkable without a curative, deeply debilitating or deadly bone marrow transplant. Zavie was 102 in his own club, and apart from his infectious humor and hungry camera, he gave me a baseball cap with my own Zero Club number. Giora from Israel soon became the godfather of our global CML family after he pestered the Novartis CEO to get him into that meeting in CH. Sandy and Elizabeth, two very unique characters running CML Support UK, and Pat wo had set up The Max Foundation after the loss of her stepson to CML, deeply impressed me. Norman became a role model with his genuine determination to always get what he asked for. Many more. This opened a new world of societal engagement and purpose, transformed me from a young internet geek feeling half dead into someone who wanted to make use of the time that remained.
This week when I spoke in Schaffhausen at the Rising Tide Foundation for Clinical Cancer Research board meeting about Symmetrian, our upcoming patient expert matchmaking platform, I took a detour to the Rhine Falls which I remembered from 2003. This flashed me totally.
Unfortunately, we lost some of our old friends on the way, while some have turned into global leaders in patient advocacy.
It’s so good to go back to the roots, remember why we do all this, and being grateful for being capable to kicking ass 22 years later. What a privilege, what a luck. Of course I’d preferred not to get cancer, but am grateful for a life of purpose, and to get to know so many amazing people who make a difference.
Writing this on my flight to the congress of the American Society of Hematology, where I’ll present our CML patient preference study.”
More posts featuring Jan Geissler.
