Mike Hu - Two Sons. One Diagnosis. We can do better.
In the first part of our discussion with Mike Hu, we hear the story of his two sons with Mucopolysaccharidosis Type 2, or MPS2.
Their responses to therapy and the typical delay in diagnosis they experienced for the older boy has led Mike to turn his professional skills to transforming newborn screening – but we will hear more about that next time.
Everleigh: SETD5 Clouds our Rainbow and Sunshine Baby
Everleigh was the answer to Brittany and Chris’s dreams, their sunshine and rainbow baby after years of trying to become parents. Clouds started forming before Everleigh was even born.
Ask Me Anything
Recently, Sanath put out a request to ask him anything with the promise we would answer as many as we could on our show. It was a bit scary, not knowing what we might have signed up for. But a commitment is a commitment.
If you like the “Ask Me Anything” format, watch for future requests for questions.
Surprising Repurposing of an Asthma Drug
All rare disease parents want to see progress in the search for a treatment for their child. Sanath is has found a possibility through a high throughput screen.
Season 3 Premier - Surprising Progress During Our Break
As we launch Season 3, we learn about some exciting new developments for Raghav over the past few months. Some huge milestones were met while we were on our hiatus. You will need to listen – no spoilers here. We also looked back at Raising Rare in 2021.
True Fear, New Perspectives
Everything changed in August. It was a normal day, maybe even a better morning than most. Raghav was taking a nap when they noticed something was wrong. Something was very wrong.