Tuesday June 15, 2021

Shannon’s Ironman Challenge for Myhre Syndrome

Shannon Chamberlin is taking on one of the toughest challenges out there - an Ironman and he's doing it for Presley, his niece who was diagnosed with Myhre Syndrome in 2017, when she was three. Thankfully, Presley doesn’t have any major health issues at this time but was diagnosed with autism and ADHD where ABA therapy is helping her get through some of these challenges. Shannon is Captain for Sacramento Metropolitan Fire District so physical challenges have always been part of his life, at home and at work.

“I am taking part because I truly want to help. I know that to begin, continue, or even complete research on Myhre, funding is needed. When I’m training and find myself becoming rather fatigued, sore, tired, thirsty, and hungry. I honestly begin to think of Presley.

My Art Project - Get Involved

To celebrate the MSF Virtual Conference, we have launched My Art Project. Magda, who is part of our Myhre community, inspired us with her love of art and she has chosen a theme of Nature.

Anyone in the family can enter, maybe create a group piece, and your art will be showcased in a presentation gallery during the MSF Virtual Conference on 10-11 July. You’ll also be entered into a prize draw to win a $50 gift card to stock up on art supplies.

All you need to do by 1 July is…

- Send a close-up photo of your NATURE inspired art to myhre@myhresyndrome.org
- Send a photo of the person entering, with their name and age

We can’t wait to see your creations and show everyone your talents at the conference!

The MSF Virtual Conference - 24 days to go!

On 10-11 July we have 21 speakers from around the world sharing their expert knowledge of Myhre Syndrome. Here’s more information on two of our fantastic speakers.

Bert Callewaert MD, PhD
A review of both the clinical outcomes in adulthood of those individuals identified during childhood, as well as initial presentations in individuals diagnosed in adulthood. Both groups will be compared with respect to the severity of neurological and systemic manifestations.

Valérie Cormier-Daire MD, PhD
A discussion on the importance of the network between physicians, researchers, and patients. How we develop appropriate cellular and animal models and how we develop novel perspectives in the treatment. The talk will describe the natural history and identify endpoints for future clinical trials.

Myhre & Me Podcasts - Episode 6

In Episode 6 of the Myhre & Me podcast series we chat to Gustavo Sabato who lives in Argentina with his family. Chiara, his 10-year-old daughter has Myhre and we talk about how they got the diagnosis, what therapies Chiara enjoys and her love of swimming. 

Myhre Information Document - NEW