None of Us Is as Smart as All of Us: Reflections from Rallying to the Challenge 2026
Tom Isaacs, founder of Cure Parkinson’s Trust
Every year around the first day of Autumn a little-known UK based charity hosts an event in Grand Rapids Michigan. The charity, known simply as Cure Parkinson’s (CP) is one of the most important Parkinson’s organizations no one in America has had heard about. Started by a group of People with Parkinson’s, led by a man named Tom Isaacs, diagnosed with Young Onset Parkinson’s in his late 20’s, he took the bull by the horns and walked 4,500 miles along the coastline of Great Britain raising funds and awareness for what is still a largely misunderstood disease.
In 2005 Isaacs and three other people living with the condition established the Cure Parkinson’s Trust, what we now know as Cure Parkinson’s. Not only did Tom champion and raise funds for research, but he also participated in it himself. The GDNF therapy trial, known as the Bristol trial and documented in a BBC documentary “The Parkinson’s Drug Trial-A Miracle Cure” was a uniquely exciting and frankly shocking therapeutic trial that involved large ports surgically implanted into the skulls of the 41 participants. Unfortunately, that trial did not meet its clinical endpoints, but what was learned from it paved the way for the gene therapy trials on-going today, which may quite possible be the first disease modifying therapy, a form of a cure. Sadly, Tom passed suddenly in 2017 at the age of 49, but his legacy lives on, in part through the award that is bestowed each year in his name inside an auditorium at the Van Andel Institute, in Grand Rapids Michigan where Grand Challenges is hosted. The Tom Isaacs Award is given to a scientist that meaningfully involves people with Parkinson’s and is in my opinion the most important award in Parkinson’s.
“Advocacy isn’t a title. Advocacy is action.” - Esther Labib-Kiyarash
Malu Tansey with Esther
So, how did I end up at Grand Challenges back in 2024? Great question. The answer to that is David Sangster. When I was diagnosed with Parkinson’s in 2023 there was no welcome wagon to advocacy. I started sharing some videos on TikTok, then Instagram, and when I realized the science interested me I also realized almost no self-respecting scientist would be caught dead on social media. With one exception: Twitter. Turns out smart people of old believed Twitter to be the smart man’s social media, so I started a Twitter account. There I encountered a sea of short musings and reflections, an unfamiliar environment for this video girl, but I did my best to make a splash. Instead, I mostly irritated people and almost immediately David Sangster aka @Tapehead81 came to my defense. I always google people that I interact with online, well I did back in 2024, not possible anymore. David, it turns out is a veteran of the Parkinson’s advocacy on a global level, and was a friend of Tom Isaacs.
My path to advocacy was forged by all the great advocates that came before me and it was Sangster that suggested I attend Rallying. You see Grand Challenges isn’t just a Parkinson’s scientific conference, it hosts a second, parallel event specifically for people with Parkinson’s…and it’s FREE. This event is called Rallying to the Challenge. That was all I needed to know to book a flight. Being surrounded by THE researchers was amazing. I met Roger Barker and took an awkward selfie with him (little did we know that in 2026 we would share a stage at World Parkinson’s Congress). During the first session I was able to ask so many questions they had to cut me off. I learned more in those two days than I had in a year.
Former CEO of Cure Parkinson’s Will Cook with CEO Helen Matthews
Helen Matthews, CEO of Cure Parkinson’s, was and is, one of those people that you know puts her heart into everything she does. The second day at Rallying she spotted me struggling in a corner with dyskinesia and magically appeared with a bottle of water, knowing I would need it to take my medication. This is something only seasoned veterans of being around people with PD can pick up. There is something oddly comforting about being in a room with other people with Parkinson’s and those that love us and dedicate their work to improving our lives. I wish everyone could experience that. The science is fascinating, but the real reason I go is always the people. I couldn’t make it in 2025, it was sandwiched in between my attending the first ever Young Onset Parkinson’s Network retreat, which was absolutely life changing and I encourage everyone diagnosed under 50 to attend this years, and my daughter’s 14 th birthday trip to Tokyo. Believe it or not I do my best now to know my own limits when it comes to travel.
This year was also a whirlwind as I was able to meet so many friends at World Parkinson’s Congress. Most notably David Sangster himself, as well as reconnect with Helen Mathews. Going back to Rallying was a full circle moment for me. This time I met a dear friend there named Karen, a rare double genetic mutation carrier, lifelong research participant and quite possibly the sweetest person alive. Together we laughed and learned and shared some good times with researchers and neurologists, drug developers and people with Parkinson’s like us. More and more I am less interested in the science itself than the people that are passionate about understanding it. I would like to thank Saranna Fanning for breakfast, Matt Farrer for driving all morning to plead his case for the SNCA population and being our taxi, Richard Wade-Martin for introducing me to people (even though he just met me and had no idea who I was) and Malu Tansey for always showing up and doing anything for the community. They don’t get paid for this; they do it because they care, and because they are advocates as well. Tom Isaacs embodies the spirit of advocacy I aspire too, the kind of advocate that just gets busy DOING it. I will leave you with his own words:
“None of us is as smart as all of us”- Tom Isaacs
Big thanks to Helen Mathews and Madeline Bonser for making this possible for me. Learn more at https://cureparkinsons.org.uk/ and https://www.vai.org/event/2026-rallying-to-the-challenge/ recorded sessions will be available at Cure Parkinson’s YouTube channel @cureparkinsons