This article takes you through what it takes to create a clinic, what they can and can’t do and the options available to access the clinic if it’s not in your home nation.
Read more“Everything about genetics is so fascinating and the passion for the Myhre community is contagious”
Eleanor Scimone, the new Clinical Research Assistant, at the Massachusetts General Hospital Myhre Clinic in Boston, talks to us about her new role and her love for medicine.
Read moreThe first MSF Virtual Conference - What a weekend!
After the last 15 months of isolation, the first International Myhre Syndrome Foundation Virtual Conference held July 10-11, 2021 was just what our Myhre community needed. For two days, over 150 Myhre families, researchers and healthcare providers from 19 countries connected through cyberspace to hear 21 speakers on topics as varied as genetic causes, caregiver stress and the unique cardiovascular features of the syndrome.
Read moreAnna Young chosen for Special Olympics 2022
Congratulations to Anna Young, 23, for being chosen to represent the Virginia Delegation at the Special Olympics USA Games 2022 in Orlando, Florida!
Read moreThe Million Reasons Run: Elliot’s story
Elliot and her friends and family raised more than $7,000 last month by taking on a team challenge that saw them collectively run over 940 kilometres!
Read moreMagdalena's Story
At age 20, Magdalena Dabrowska has recently learned that she has Myhre syndrome. This is her experience on her long road to getting a diagnosis.
Read moreSophie & Rafael's Story
Sophie Pottier and her family live in France and shared their story with us via a translation service. Rafael is ten years old and Sophie takes us though their path to a diagnosis.
Read moreWatch our community video!
Watch our new video here celebrating some of the wonderful Myhre community!
Read moreOur journey with Myhre Syndrome
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.