Thursday May 13, 2021

The Myhre Syndrome Foundation Virtual Conference on 10-11 July is now OPEN for registration. Get your ticket today and take advantage of the early bird price of $35, giving you access to 21 speakers over the two-day conference. Don’t delay, the price goes up on 1 June. Remember all content will be on the website 48 hours after the conference ends, so if you can’t join us live you won’t miss out.

Here’s more information on two of our fantastic speakers.

Mark Lindsay MD, PhD, Cardiology - The Heart of Myhre Syndrome
Children and adults with Myhre Syndrome have early onset diseases of the heart and blood vessels. In this presentation we will discuss the unique cardiovascular features of patients with Myhre Syndrome.

Sofia Douzgou Houge MD, PhD - GI and Endocrine: Growing Up with Myhre Syndrome
A review of what we know so far about feeding, gastrointestinal and endocrine problems, including details on an assessment and surveillance checklist.

Don’t forget you can Buy A Block and sponsor the conference, your donation goes directly towards life-changing research. There is so much to learn about Myhre, and your help is invaluable. 

Thank you to our sponsors Vermillion Films, Destination Wellness and Villa San Michele and for all the personal pledges - view them all here.

Read All About…Us!

We're delighted to have been included in the RARE Bones Spring edition from Rare Revolution magazine, a publication dedicated to the rare community. It has over 20,000 unique global readers, and our article helps spread the word about Myhre Syndrome and bring greater understanding to new audiences.

Congratulations to the 2021 McGovern Nominees

Three members of the Myhre Syndrome Clinic team at Massachusetts Hospital, Boston have been nominated for a McGovern Award for Clinical Excellence.

Dr. Angela Lin (Medical Genetics), Dr T. Bernard Kinane (Pediatric Pulmonary) and Dr Sarah Kadzielski (Pediatric Gastroenterology), were recognized for this prestigious accolade. We’re thrilled that Dr Angela Lin and Dr T. Bernard Kinane are also speakers at the Myhre Syndrome Foundation Virtual Conference!

Myhre & Me Podcasts

In the third episode of our Myhre & Me podcast we’re joined by Katie White from South Dakota, who has Myhre and her mum, Ines. We talk school, public speaking, what it means to have Myhre and get to hear Katie’s wonderful sense of humour.

Just launched today is episode four, Deleena Therien (pictured above) from Vancouver, Canada talks to us about Oliver and Ivy, her three year old twins and how Ivy’s diagnosis in January 2020 came after years of searching for answers. We chat through a brain scan scare and how Dee has coped with twins and receiving the diagnosis during a global pandemic.

Also a huge thank you to Dee who has raised an incredible $36,000 for the Myhre Syndrome Clinic at MassGeneral.