Our Story
How we got here – A Note From Joseph’s Mom
It all started with a little boy named Joseph and a really crummy diagnosis. A diagnosis that is brutal and surreal and so painfully real all at the same time. It was a seemingly normal winter day ten years ago when a neurologist, who we’d met just moments before, told us that Joseph had Duchenne muscular dystrophy. The doctor explained that there was no treatment or cure. Duchenne, he continued, is a progressive, degenerative muscle wasting disease that would steal Joseph’s ability to walk, to sit up, to use his arms. Then it would attack his heart and lungs.
I looked at my little boy, playing with a puzzle on the floor, and I made a silent promise to him that I would fight for him. We would leave no stone unturned. At that moment, I had no idea what I meant by that, but I knew that I would channel my grief into something that would help him. I could feel it in my bones.
I thought about Joseph’s brother and sister, and I made a silent promise that I would teach them something about handling adversity and making choices about how you carry this kind of burden.
I thought about my friends and family and I hoped like heck that they would show up. They did. And it was really that simple. With the proceeds from a sold-out golf outing, I launched Team Joseph. I spent my days, and many long nights, researching Duchenne and calling scientists and looking for answers and finding out that there really weren’t any. We made it our mission at Team Joseph to fund the most promising, cutting-edge research that has the potential to help this generation of boys. Although Joseph is our original inspiration, we fight for all children and young adults battling this disease.
Where we’re heading….
We’ve learned a lot in the years since Team Joseph was formed. We’ve learned a lot about fundraising and telling our story. We’ve met amazing donors and strangers who are angels. We’ve learned that although we first thought “morpholino” was the name of an Italian shoe designer, it’s really a molecule that’s used in modifying genes.
We’ve learned that our commitment to funding research has made a difference. There were only a handful of clinical trials on the day Joseph was diagnosed. Today there are dozens.
We’ve learned that research is super important, but while we wait for a treatment or a cure, we have to take care of each other. While the research will fuel our hope, it’s love and kindness that fuels our hearts. So, now, while we continue our commitment to funding promising research, we’ve also launched an assistance program to help families with needs right now, while they’re waiting for a treatment. Today. So they can find comfort and community and relief in the moment.
We’ll continue to pay attention to the needs of our community. We’ll ask questions. We’ll listen. We’ll do whatever we can to make the journey lighter for every Duchenne patient and their family.
exudes a positive Impression to believe.