Rare Disease Blog

Sitting in the doctor’s office, trying to understand the immensity of what is being explained to you. All your hopes and dreams about the life your children are going to have and the realization that it’s not going to be…

I have always had an internal pressure to be *actually impressive*. Not inspiring, not motivational. Nope, I have always wanted to be realized for talents unrelated to my physical ability – for someone to say, “Wow, that’s actually impressive.” When…

When we see a family affected by disability, we usually notice the person who has a disability first. Many times in that family, there is a sibling of the one affected by disability. The thought of what a sibling goes…

Terry and his service dog, Mischief, who's always by his side to make him smile On Saturday, December 28th, my brother fell and broke both of his femurs. Broken bones are always unwelcome. But for our family, one who is…

To say I have been disappointed with people since my boys were diagnosed would be a huge understatement and I know there are many in the rare disease community that can agree. It boggles my mind how some people can…

During this season of joy, one of the starkest reminders of the emotional rollercoaster of Duchenne is clinical trials. So, you have two children with a rare genetic disorder. You start discussing the clinical trials that you have been hearing…

Kirsten, her husband Mark, and their son’s Devin and Caeden. My name is Kirsten Parisi and I am the mom to two amazing boys, Caeden and Devin, who are fighting Duchenne muscular dystrophy (DMD). Our family, including my husband Mark,…