I am Madeline Kennedy, a member of the Worthington Community. I have been battling this horrible terminal disease for eight years. You can read more about my journey at www.conquerALS.com. I have far surpassed my expected survival of 2-5 years. ALS is relentless, and I know my time is running short. I have not been able to stand, let alone walk for almost 5 years. My arms and hands, initially unaffected, now fail to respond to my efforts. I cannot lift my arm or dial my phone. I can no longer swallow the foods I so enjoyed, and my ability to breathe is diminishing. It is not a situation I would wish for anyone so I focus on the many blessings in my life and a desire to make this a better world for those diagnosed with ALS in the future. There will be a day in which the diagnosis of ALS will not be a death sentence; there will be treatments to stop the disease and eventually, to reverse its destruction.
We have had five successful January fundraising events. We have raised over $262,000 for ALS research. Wow! We are so very proud. But there is so much more work to be done. There are now THREE FDA approved drugs for the treatment of ALS. There was only ONE when I began this journey, I have been on two experimental drugs (drugs in clinical trials). I have had ALS too long to participate in most clinical trials; therefor I received these drugs through “expanded access.”
WE NEED YOUR HELP
Our 2020 Annual Fundraiser will be an online campaign instead of the annual golf outing and silent auction All proceeds from our event will continue to go to ALS research, with the money raised again being split between two research endeavors. The ALS Therapy Development Institute works in the laboratory to identify, develop and repurpose compounds in search of a treatment for ALS. The Mass General Healy ALS Center runs targeted clinical trials that allow drugs/treatments to be tested on ALS patients. These trials would NOT happen without private funding and personal commitment. I have donated my own blood and tissue samples to each of these research centers. Both approaches are essential to finding a cure.