As many of you know, Team Joseph was selected this year as the primary beneficiary of the Northwestern University Dance Marathon (NUDM), which takes place in March. Since the announcement in May, NUDM has been truly inspirational in how committed the students are to being part of the Team. They recently asked me to write a guest blog introducing the inspiration and motivation behind Team Joseph for their website.
At a time of year when we have been reminded to recognize what we are thankful for, I thought about how thankful I am for each and every one of you and all you do as part of the team. So I’m reposting my NUDM blog here as a reminder of what we’re working so hard to achieve.
A Look into Team Joseph
“There is nothing we can do for you,” just might be the most difficult words a parent can hear from a doctor . . . a doctor who you desperately want to have the answer, the treatment to help your son. Unfortunately, this is the standard message to parents when children are diagnosed with Duchenne muscular dystrophy.
Five years ago, I took Joseph to his pediatrician simply thinking there was a mild delay in his physical development. Within the next 24 hours, after being sent to a neurologist who would interpret Joseph’s detailed blood work, I lost my security, my vision, my strength and my perspective. With one vial of blood, one diagnosis, one short conversation with a doctor, I lost any sense that I had control over the most important thing in the world to me – protecting my child.
Joseph was quickly diagnosed with Duchenne muscular dystrophy, a devastating degenerative muscle disease in which children’s muscles deteriorate over time. As their friends are growing stronger, they are growing weaker, losing the ability to walk, to hug their moms, and to feed themselves. Ultimately, Duchenne attacks the heart and lungs. Most do not see their college graduation.
After Joseph’s diagnosis, I let myself cry for about a day. Then I decided that wasn’t going to help Joseph, so I committed myself to doing my part – to making a difference for my own son as well as every other child affected by Duchenne. From that decision, Team Joseph was born. Friends and family and volunteers gathered and we began raising funds and awareness for Duchenne. Together, as Team Joseph, we are working on turning the tables on Duchenne.
We knew that it would take an army of people to help us fight this disease, and we knew we would have to count on the generosity of strangers to fuel our fight. That’s why we named our effort Team Joseph – Joseph is certainly the inspiration, but we fight for all the boys with Duchenne. We fight for their families and their communities and everyone touched by this disease. Joseph and all the children with Duchenne are someone’s brother and cousin and grandson. They are someone’s student, someone’s neighbor, someone’s best friend. The impact of Duchenne is far-reaching.
You can call it many things – family, community, team – the bottom line is that a devastating disease forces you to expand your circle …. to reach out to a larger community, to assemble a far-reaching team, to embrace a more expansive family connected, not necessarily by blood, but by heart and passion.
Our primary mission at Team Joseph is to fund cutting edge research that will make a difference for THIS generation of boys. We are proud to be supporting numerous research projects including some at University of Washington, University of Michigan, University of Iowa, and Phrixus Pharmaceuticals.
Our mission is to make sure that no parent has to hear “there is nothing we can do for you” ever again. Our mission is to make a difference and leave a legacy so great that we may never know the full ripple effect of its impact. When we work smart, leverage each dollar and work in close partnership with scientists and research companies, there is the promise for an end to Duchenne. Days count, hours count, minutes count. Every second counts. We are so grateful to everyone who is joining the Team!