Welcome to My Personal Page
Dear Family and Friends,
You see there’s this young boy - living with Duchenne Muscular Dystrophy. He has a beautiful smile, loves Rutgers Football with a passion, and is a great reminder to be present and make every day count.
We have been blessed to meet Danny, the nephew of two of our great friends. Danny was diagnosed with Duchenne Muscular Dystrophy (DMD) at the age of four years old. DMD is a progressive, degenerative disease that takes away the functions of the muscles, including the heart and lungs. Life expectancy is nowhere near the age any parent wishes to know.
Our friends have opened up their hearts to the Duchenne Community. 12 years ago, after Danny’s diagnosis, they started running for Run for our Sons. Ever since, Team Danny has been on the move! It is within these past 11 years, Team Danny has laced up their running shoes and traveled to Disney to bring awareness to this genetic and fatal disease, and fundraised over $330,000! Every bit helps fund critical research in finding a cure. Each year, the fundraising bar for Team Danny is raised a bit higher. For 2018, in their 11th year of running, Team Danny strives to raise $100,000!
These funds guided a huge victory! This past month the Duchenne Community celebrated when the FDA approved a Duchenne treatment! While it is difficult for us to not see Danny included in these trials, we celebrate with other Duchenne families as these trial drugs benefits their sons. Our hope strengthens that someday there will be a cure or treatments to help all boys with DMD.
This January, our family is honored and grateful to run in Disney with Team Danny. Kim and I are signed up for the Dopey Challenge, which includes a 5K, 10K, a half marathon, and our very first full marathon. 48.6 miles total! Emma and Lexi will each run in the 5K and 10K. We are committed to pushing our bodies to their limits to raise awareness.
On a more personal note, over the summer we witnessed a momentous event when Danny pushed his own body in order to tread and swim underwater for short periods of time. While Danny continually pushed himself to do every day kid things, we became more aware of the impact of Duchenne when we witnessed it on a daily basis. We’ve been there when he asks you to scratch his nose or rub his eyes. We’ve been there when someone tries to give him a high-five pausing their hand in midair - then seeing them realize that he can’t reach them. We’ve been there when he’s hungry. It’s with great pride we have watched our own girls take time to feed Danny dinner or raise a straw to his mouth to help him take a drink of water.
Every year on September 7th, World Duchenne Day, Danny’s mom posts the daily struggles of life with Duchenne. While every post she makes brings a greater understanding of her every day, it is this post that resonates with us the most:
I'll never forget that first time I felt the boys squeeze back a hug when they were tiny babies. Oh my, it melted my heart more than I knew was possible. That feeling of that squeeze that never wants to let go. So much is said in a hug. "You are my safe place,” "you love me unconditionally,” "you forgive me,” "love, just so much love.” I think for myself the hardest part of Danny losing arm strength is not feeling those arms wrapped around my shoulders and get that amazing “squeeze.” We continue to squeeze him tons. There are some days when I allow my mind to go to that dark place, what I wouldn't give for that feeling just one more time. #makeeverydaycount
Danny and his family is what keeps us going. He pushes us to go above and beyond, to do things we never thought possible. At times, it’s hard to get up and go. You’re tired, your bed is too warm, you’re sore… none of these things matter. Not when you have this young boy who doesn’t have the chance to do these things. You have to go to swim practice. You have to go out on that run. You have to go get on that bike. You have to - because he can’t. We are his legs.
"We run for a cure. We run because we care. We run because they can’t."
If you are able to donate, we thank you for your generosity. Donations can be made online. If you prefer to pay via check, please email Jeff at firstname.lastname@example.org for mailing address info.
Additionally, please inquire into whether your employer offers company match and let us know as this greatly impacts our efforts. Matching contribution forms can be sent to Parent Project Muscular Dystrophy - 401 Hackensack Avenue, 9th Floor Hackensack, NJ 07601.
Please support our fundraising efforts to advance the research and help find a cure.
Jeff, Kim, Emma, and Alexis
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