You might still be able to remember the feeling that came seconds after you raised a bucket full of ice over your head as part of the Ice Bucket Challenge for ALS.
It was cold. It was a little shocking. It was also very well worth it.
We really didn’t know it at the time, but as we were drenching ourselves to the bone with ice water and nominating the next participants in the challenge, there was a project taking shape in the Netherlands. It had a goal. It had ready and willing participants. It had researchers ready to analyze data. The initiative was just missing the hardest thing to come by. Money.
And then the Ice Bucket challenge came along and helped to ignite something that could really make an impact on a ruthless disease.
Coupled with existing fundraising initiatives in the Netherlands, the Ice Bucket Challenge gave life to Project MinE, whose design is to find treatments for Amyotrophic Lateral Sclerosis.
You might know a couple of facts about it already. It is also known as Lou Gehrig’s disease and life expectancy can be as short as 2-4 years.
Project MinE aims to collect the sequenced DNA of 15,000 ALS patients and 7,500 control subjects and then compare the two.
“Many genes underlie ALS,” says Project MinE research leader, Professor Jan Veldink. “ALS is not one disease, it’s a collection of diseases. We’re finding new genes all the time. Our hope is that there will be new treatments based upon those new genes that are being found.”
The undertaking is a massive one. It is a global project featuring a number of international researchers, but Veldink says it is the data that provides a whole new dimension to its size.
“If you sequence one person’s DNA, it takes up roughly 100 GB of data, so if you have ten samples at one terabyte, that equals one laptop. We need to get over 20,000 samples.”
Project MinE is now past the halfway mark in that data collection. Go ahead and picture stacks upon stacks of laptops in room after room. With the help of a supercomputer in the Netherlands, they’ve been able to simplify their storage somewhat.
It has been a rocket-like start. They are only about three years in right now and word is still getting out.
And some of that word had a very local connection to it.
Chris McCauley played for the London Knights from 1979 to 1983. He attended Western. He announced publicly that he had been stricken with ALS in 2015 and he passed away on August 9 of this year.
Like all ALS sufferers, McCauley knew instantly that he was battling time. The disease tends to progress very quickly.
But he wanted to leave a legacy and he did.
McCauley became the Canadian ambassador for the Project MinE through ALS Canada as a way to thank the organization and to give back.
McCauley stated through ALS Canada that he was calling for the entire country, “To get on board with (Project MinE) and really do something to drive a good cause that has the potential to change many people’s lives worldwide.” He added, “I think of others who will come after me and like me, lose the blossom of their health so insidiously. I want to do something to make it better.”
According to Professor Veldink, his words are ringing true. Progress is being made.
“We are finding new genes already. Last year we found two novel genes and there are trials underway for C9orf72 which was only discovered five or six years ago,” says Veldink. “The hope is that can be an example for all the other genes that we hope to find and that someday there will be a specific treatment that does more than all of these other generic drugs that we are testing and trying.”
Now that the Ice Bucket Challenge has wrapped up, new fundraising initiatives are spreading. A swim in the Amsterdam canals typically raises two million euros per year and swims have popped up in London, England and New York City as well.
All have the same goal that McCauley had and other ALS sufferers still hold tight. The hope that one day this research will lead to treatments and allow anyone stricken with the disease the kind of hope that is sometimes very difficult to hold now.
For more information, please visit https://www.als.ca/ and https://www.projectmine.com/