Jansen's Metaphyseal Chondrodysplasia

Jansen’s metaphyseal chondrodysplasia (JMC) is an ultra-rare skeletal disease that affects less than 30 people worldwide. It is an autosomal dominant skeletal dysplasia, meaning only one parent has to carry the gene for their child to inherit it. Interestingly, I never got a diagnosis until my second son, Jahan, was born. JMC causes symptoms such as: Short-limbed [...]

Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should! Courage shows [...]

When you’re the parent of kids with disabilities, some moments are just heart-aching. This is one of them. My two boys, Arshaan and Jahan, live with Jansen’s metaphyseal chondrodysplasia. They are one of eight people in the world diagnosed with this rare condition. A few days ago, they both had the best time playing with [...]

The U.S. House Energy and Commerce Committee’s 21st Century Cures initiative is a bipartisan effort to help speed the development and delivery of new health care treatments and cures in America. There is much to be excited about! Along with a welcome increase in funding for the National Institutes of Health (NIH) and the Food [...]