I want to be a voice for those who don’t have the bandwidth, but who deserve to have their voice heard, to have their needs met.

My dad was my everything. From daily political discussions over the dinner table, to learning how to cook from my dad, skiing with my dad, arguing what shade of blue the sky is with my dad, and taking care of my dad when he was diagnosed with ALS.

My dad had the rarity of being diagnosed not only with ALS, but also MS. In true Jeff Mamola fashion he had to go above and beyond. While his diagnosis took on a lot of hardships he was still my dad. The same goofy guy who showed drove me to the first day of middle school in a Golden Girls wig and glasses, or my first varsity volleyball game in a mullet wig with my six-year-old brother in tow with a spiderman suit on.

It’s been five short and long years since he died, and I am finally ready to jump headfirst in helping any way I can in the ALS community because while it affects way more people than I ever realized, it tends to be a quieter disease. People retreat, those affected by the disease and those supporting or caretaking for those affected. I want to be a voice for those who don’t have the bandwidth, but who deserve to have their voice heard, to have their needs met, and for those who don’t deserve to go bankrupt or have to live in a state-run care facility because they don’t have enough money to be cared for at home.

I think of my dad every day, and I want him to know that I spent my life fighting for those who are enduring the same anger, sadness, and frustration this disease – ultimately helping to push for a cure.