Welcome to my fundraising page!

The first time I remember hearing about ALS I was 16. It was when my dad, Joel Kesner, who worked out every day, survived the Vietnam War, worked to support his family, and was an avid lover of football, started to limp. I watched as he went through every possible diagnostic, every test, every treatment, until he was ultimately diagnosed with ALS. Though this was not the first time, nor would it be the last time I would see a family member diagnosed with this horrific disease. Because ALS has always been a part of my family. Before I was born, my grandmother was diagnosed with ALS. She passed away before I turned one, so although I did not know what to expect when my dad was diagnosed, he did. His hard fought battle with ALS ended in 2007, only a year and half after his diagnosis. But the disease was not done with us yet, because just 10 years later, ALS took my Uncle Alan in 2017.

When my dad was diagnosed, the C9orf72 gene mutation had not been discovered yet. It wasn't until 2011, 4 years after his death, that a team of researchers made the breakthrough discovery, linking this gene mutation with familial ALS. Through their research, scientists were able to demystify the disease that had been plaguing my family for multiple generations. Their discovery also has direct implications, theoretically reducing delays in diagnosis times and providing an avenue for potential new therapies. 

Without proper funding for research, this gene mutation would most likely have remained a mystery. But that was not the case, and thanks to compassionate donors and genius researchers, those advancements were made. But those discoveries are more than just lines on paper to me, because in 2017 I found out that I am a carrier of the c9orf72 gene mutation. This means that not only am I likely to get ALS at some point in my life, I also run the risk of passing it on to my children. So that is why I am running the NYC marathon: To help raise money for ALS TDI so their researchers can find new treatments and therapies, driving towards the ultimate goal of ending ALS, if not for me, but for future generations of people like me. 

On Sunday, November 6, I'm proud to be running as part of Team ALS TDI for the upcoming TCS New York City Marathon. I will be running 26.2 miles on behalf of the The ALS Therapy Development Institute, an Official Charity Partner. Your donations fuel our continuous efforts to advance promising drugs and help END ALS. Please help me by making a donation.  Thank You!