HONEY BADGER RUNS THE HALF!
Abbey Tiderman & family
Al and Kathy Ruggeri
Bob & Kay Judge
Gail and Kevin Tighe
Kathy, Dave, Ella, & Keelan
Krysta and Laura
Malinda & Braxton Manley
Mark, Kirsten, Caeden, & Devin Parisi
Nick & Margaret Parisi
Paul & Donna Piatek
I joined MDA Team Momentum on my 31st birthday because I couldn't imagine a better birthday gift to myself. I started running thanks to my cousin David who the day after Thanksgiving, 2012 encouraged me to get my butt off the couch and go run a mile with him. I had no idea what a love affair this running thing would become. Two years after that first mile, and about a year after my first 5K, I am signing up to run the Boston Michelob Ultra 13.1!
I've worked for MDA for 6 years. Over this time I have met and been inspired some amazing people. It would be impossible for me to say in a few paragraphs how profoundly these people have changed my life. It is an honor and a blessing to know them. There are so many names that I will carry with me on September 14 to remember what it is to fight ALS, SMA, Myotonic Muscular Dystrophy, Mitochondrial disease ... too many people who would give anything to run one more day, one more mile - it makes 13.1 miles easy.
I am exceptionally proud to be running this particular race for 3 special boys - Keelan, Caeden, and Devin. These 3 happy, full-of-life, smiley peanuts have Duchenne muscular dystrophy.
Before I started working at MDA I had no idea. So, it's okay if you don't, either.
Duchenne muscular dystrophy is a genetic disorder that primarily affects boys. Females are carriers and most often show no symptoms, so moms-to-be have no idea that they may be passing this on to their sons.
Duchenne muscular dystrophy is progressive. DMD gets worse, never better. There are some treatments, and standards of care, that improve quality of life and maintain health for as long as possible, but despite knowing what causes DMD, we still can't cure it.
Duchenne muscular dystrophy is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. You can't just eat more chicken to make more muscle - boys with DMD don't have the building blocks that they need to make healthy muscle.
Duchenne muscular dystrophy is terminal. FOR NOW. Not forever. DMD is curable. I believe this in my heart of hearts. I see every day the progress that researchers and drug companies are making. There has never been a more hopeful time for families fighting Duchenne muscular dystrophy. We know more about DMD, we understand more about how to treat it, and MDA is doing more to fund drug development than ever before. We've been funding DMD research for decades and we are committed to seeing it through to the end.
I am running for Keelan, Caeden, and Devin because they remind me how joyful childhood is and how simple it should be to enjoy the pleasures of being a kid. These boys remind me that some things in this world are completely out of our control, but every person has the chance to step forward and do something good to help someone else.
I am PROUD to work for MDA. I am a part of something bigger than myself and the funds I raise will someday save lives. As we say around here, I am progress.
Thanks for supporting me, my efforts, and MDA Team Momentum. YOU ROCK. So many people raise money for so many things, and I'm flattered that you're thinking about giving to MDA (and that you made it to the end of this page).
ANY amount you can give is appreciated and matters. Your gift makes a real difference - I know, because I see the impact that MDA makes in our community. Hospital clinics that provide unrivaled care, a cutting-edge worldwide research team that leads the way, clinical trials and drug development that could make a real impact on the future of muscle disease - it matters.
On August 28, 2014 I lost a good friend of mine, Todd Ketchum, to ALS. This son, brother, husband, and father of 3 was only 48. I became friends with Todd through MDA and am blessed to have known him as well as his wife, children, family, and friends. What an incredible crew. Todd was a man who could, and would, do ANYTHING. He encouraged me to believe in myself and to try any running goal I set my mind to. I never thanked him properly for his belief in me. He cheered me on and motivated me with his own stories of running (and windsurfing, kiteboarding, fishing, biking ... the list goes on!). Todd's loss is huge. ALS is a terrible disease and is just as cruel as Duchenne. Todd's body failed him as time went on, but his mind stayed sharp. While medicine could help prolong Todd's life, it couldn't keep him with us. Just a few weeks ago he was celebrating my 10-mile "long run" with his family and, upon his passing, his wife encouraged me to run for Todd. Todd, your story is part of mine and I am proud to be carrying you in my heart on race day.
I'll be thinking of you, and thanking you, with every mile. And, please save the date to join me on Sunday, September 14 - I'd love to see you along the route!
My Personal Web Log