Why We Ride
My brother Mike Kennedy was 47 when he was diagnosed with ALS. MND (motor neuron disease) is what it is called in New Zealand where he lived. Like many of the other stories about this disease, he is the last person you would have expected to be diagnosed with ALS. Fit, watched his diet, young, loved to have fun, drink good craft brews, ride any kind of bike, with mountain bikes his favorite, hang with his two young kids and a great partner to his wife Sally.
When I learned of his diagnosis, I had to go look it up as I had only vaguely heard of it and had no idea of how devastating a disease it is. We all had to learn fast. Given he was in NZ, he did not have access to really any support system. I reached out to clinicaltrials.gov, started researching trials, support programs and found the ALS Network. We even brought him to a couple of ALS centers of expertise in the US as there was little available in the small town of Nelson where he lived.
In my brother’s case, the disease moved so quickly we had trouble keeping up on top of all the latest technology and living aids to make the journey easier. This is where the ALS Network is such a great resource.
We ride because no one should have to deal with this disease on their own, as my brother did. We ride so the ALS Network can continue to advocate for research funding and for policy changes to support the families struggling with ALS. We ride because we need to find a cure for this incredibly devastating disease. We ride to give those with ALS and their families hope, hope for a cure and hope for living well.