Welcome to My Personal Page
Dear Family and Friends,
You see there’s this young boy - living with Duchenne Muscular Dystrophy. He has an incredibly infectious smile, loves Rutgers Football with a passion, and is a great reminder to be present and make every day count.
Danny was diagnosed with Duchenne Muscular Dystrophy (DMD) at the age of four years old. Duchenne Muscular Dystrophy (DMD) affects 1 in every 3,500 boys, progressively weakening all of their muscles.
• At the age of 7, they typically lose their ability to walk
• In their early teens, they lose the ability to move their arms
• By their later teens, they are most likely unable to move anything
• By their mid-twenties, their heart and lungs fail
• The mortality rate is 100%
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 and initiatives around Duchenne Muscular Dystrophy. Each year, the fundraising bar for Team Danny is raised a bit higher. For 2018, in their 12th year of running, Team Danny strives to raise over $100,000. Our hope strengthens that someday there will be treatments (and a cure) to help all boys with DMD.
In January, our family is honored and grateful to run in Disney alongside Team Danny for the second year in a row. To say running in Disney was amazing is an understatement. This year our family will log 129 miles of running over the four days of racing. We are committed to pushing our bodies to their limits to raise awareness.
We are blessed to spend our Fall Saturdays tailgating and watching Rutgers with Danny and his family. There is nothing more humbling than watching the entire Rutgers Football Team walk down the Scarlet Walk and fist pump Danny before their big game. Each one knowing he can’t raise his own hand up to meet theirs.
With this year’s posts on World Duchenne Day, Danny’s mom shared very intimate details and the impact Duchenne has on their family’s daily life. This post reflects on their family’s mantra to make every day count:
Today marks the one year Anniversary of #makeeverydaycount I knew it was coming up but didn't know the exact day I started it. The sentiment came after we had returned from Columbus last August and Danny was denied a heart. Once I had time to process everything, I knew that I would devote every moment to making sure the kids and Dan, and all I loved and encountered, knew how important they are to me and to the world. Now making every day count doesn't mean having the best day ever (that's an awesome bonus when that happens). It means to do something meaningful every day, a word, an action, a thought, an adventure big or small. It probably means something different to everyone. But to us it means don't let a day go by wasted. #makeeverydaycount #WDAD17
Danny is our greatest teacher and reminder to make every day count. Emma and Alexis each wrote a paragraph explaining their devotion to both Danny and ending Duchenne.
Meeting Danny Garofalo might just be the best thing that’s ever happened to me. He’s taught me so many important life lessons, and has become one of my dearest friends. Danny lives each day to the fullest - making memories, smiling, and just enjoying the little (and big) things in life. He is one of my favorite people to be around. He lives life with a smile, despite the difficulties that occur in his everyday life. I’ve been able to observe the effects of Duchenne firsthand. I’ve helped him reach the straw of his water bottle, fed him dinner, and scratched his forehead when he had an itch. I will do anything I can for him to help him. It’s heartbreaking to know that he lives with these challenges, but because of the fact that he looks for positivity and happiness each day inspires me more than I could ever imagine. It is easy to say that he has changed my life. *Emma
Knowing Danny has changed my life. By meeting him, I I’ve learned to appreciate life. He chooses happiness rather than worry or concern. I take joy in helping him pick up his water bottle, feeding him dinner, moving his feet into a comfortable position, and helping with anything he needs! Over the years I’ve watched him smile and make memories that he will remember forever. I’ve watched him at football games, smiling through the cold. In the summers, I get to spend time playing cards with Danny. I can’t imagine my life without ever meeting Danny. There is nothing I wouldn’t do for him - he’s taught me to look at the positive and live life with joy! *Alexis
Please support our fundraising efforts to advance the research and help find a cure. Donations can be made online. If you prefer to pay via check, please email Jeff at email@example.com 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.
We are so thankful to be a part of Team Danny and their commitment to the Duchenne Community.
With love and gratitude,
Jeff, Kim, Emma, and Alexis
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