For years April and Alec were at the hospital, there were lots of tests, lots of symptoms but it wasn’t until Myhre Syndrome was diagnosed that Alec went from a medical mystery to being more understood. April talks us through the journey she’s on with Alec as they navigate Myhre, as she so eloquently describes, the path is unknown but the scenery is beautiful.
Read morePatti's Story
Every person living with Myhre has unique struggles and experiences. A common thread of this rare disease is a lack of understanding and misdiagnosis. At 50yrs old, Patti Schultz just learned she has Myhre syndrome. Here’s what she had to tell us about her long road to diagnosis.
Read moreMyhre in the Midst of COVID-19
COVID-19 has impacted everyone in ways we could never imagine. As we all learn to navigate this new world of masks, social distancing and virtual family gatherings, we asked some of our Myhre families how the pandemic has touched them. Here’s what Myhre mom, Margot, had to say about life in the COVID era with daughter, Edith.
Read moreA Time of Transition
We know this deep in our hearts, but we can’t help but to pause and ponder what the future holds for our daughter and our family. So many unknowns; just like Myhre syndrome.
Read moreThis is Me.
We asked Katie White what it was like living with Myhre Syndrome. Katie is the youngest of three children and while doctors suspected a genetic anomaly from when she was a baby, it wasn’t until she was 16 years old that she was finally diagnosed with Myhre.
Read moreMeet Alex and Lee
Myhre Syndrome parents regularly run circles around their kids, sometime literally! Meet Alex and his mom, Lee, whose love for her son inspired her to lace up her running shoes in support of MSF.
Read moreFrom the laboratory to the library; Rare disease research
In the rare disease world patients, parents and healthcare providers have one thing in common, they all wish that research would be faster.
Read moreI Will Be Strong
“What we’re looking at here is a slight anomaly in your baby’s development.”
The words that turned our lives around almost 16 years ago.