Making it possible.
My name is Todd Bertamini, and I am 50 years old. My journey started in early 2017 when I was having issues doing calf raises and standing on my tippy toes, specifically my left foot. I began to talk with my family Doctor and had the first of many EMG’s and an MRI. But my focus on my left foot had to be halted as I ended up breaking my right ankle when out fencing and stepped into a badger hole (still to this day blame it on my left foot weakness). A few months to take care of the broken ankle and late 2017 started again with EMG’s and Doctor visits. Within theses visits I discussed that ALS is in my family; so, a genetic test was performed, and it was confirmed early 2018 that I had Familial ALS (SOD1).
Since then, Rob and everyone else at the ALS Society of Alberta and the ALS Calgary Clinic have been of great assistance on my journey. I have been in several research trials and am currently enrolled in the Biogen trial targeted at SOD1 gene. I am a firm believer in participation of any trial I am able to join, as it provides a future for ALS patients and finding a cure.
I was recently selected as a Community Fellow in a pilot program and enjoyed a few days attending a highly informative and inspirational ALS Canada Research Forum. Along with the Research Forum I have joined with a few others and ALS Canada to have input on the start up of a Canadian Learning Institute. With both programs I continue to advocate for ALS care and research and keep a positive outlook for change.
Prior to diagnosis I was highly active; playing hockey, baseball, golf, hiking or rodeo with my kids. I still enjoy a few of those but slowly eliminating some as my capabilities diminish. I live North of Calgary on an acreage with my wonderful wife and two amazing kids that push me everyday to enjoy it all. Not everyday is great, some days I just have to sit on the sidelines and watch but glad to be able to appreciate every moment. Each day I keep positive and have my family and friends drive me to be the best I can be and continue to advocate to a world without ALS.