It is a pleasure for me to be invited back for a second year in a row. I want to speak to about my ALS and what your support has meant to furthering the work of the MDA.
I’d first like to thank all of you for your support and generous commitment to finding a cure for neuromuscular disease.
Some of you may have noticed there is something a little different about me.
Last year when I spoke at the Gala, I was standing.
This year I am not.
You might think this would be a setback to my goal of seeing my seven year old daughter graduate from high school.
But it isn’t.
If that was my only reason to keep going-to keep existing, then I would be missing the big picture. It is an important goal and a good reason to exist-but it is not the only one.
If I only concentrated on living one more year, I would have missed that year’s worth of important celebrations, birthdays, holidays.
I would have missed my older daughter’s first prom.
I would have missed the simple joy of going out to dinner.
Or having a dinner prepared for me by another family.
Or the scent of lilacs as they bloomed almost a month before they were supposed to because of the unusually warm winter we had.
The finality of ALS has taught me to appreciate the quality of my life as well as the distant goal I have set for me and my daughter.
In a similar way, the goal of the MDA to find a cure for neuromuscular disease is a distant one. It is an important one and a good reason to exist-but it is not the only one.
The MDA’s goal is also to provide for the more immediate needs of myself and the thousands of others that live with this illness.
They provide equipment, information, and access to exceptional care professionals.
They do it with ease and compassion.
They help me maintain an independent quality of life. By being a constant resource of care and support, the MDA has helped me to achieve both of my goals:
to live another year-and to have enjoyed living in it.
And so do you. Your generosity and financial support allows me to continue counting down the years as well as celebrate the special moments within them.
And for that I am so grateful.