Monday August 16, 2021

How will you Move for Myhre in September?

We’re excited to launch the very first weekend dedicated to Myhre Syndrome awareness and fundraising. Each year at the end of September we’ll be spreading the word and uniting as an international rare community.

There are so many ways you can get involved, maybe a group walk or even a bake sale, and it’s so easy to set up a fundraising page through our very own platform,
just click HERE.

Often with a rare community it can feel like you’re asking the same people for funds so perhaps a family member or friend would instead take on a challenge. We want to extend that network so as many people as possible know about Myhre, and the community’s collective cause of raising funds for much needed research.

Don’t worry if this weekend is already booked up for you, simply pick a date that suits you to complete your challenge and instead on the Move for Myhre weekend show us what did by using our hashtag #moveformyhre

Set up a fundraising page and we’ll send you four of our new wristbands, or if you’d like to get your hands on one now, just pop a donation on our site. We’re suggesting $3 for one or $10 for four to help cover postage but any donation is very gratefully received.

MSF Virtual Conference – all content on YouTube

Following the first ever MSF Conference in July, all content is now available on our website. This means you can send the links to friends, family, doctors, and care teams so everyone can learn about Myhre and work towards greater knowledge, understanding and help for the community.

If you don’t know where to start take a look at Genetics: Update on the MGH Myhre Syndrome Clinic by Dr. Angela Lin. The clinic has now seen 40 patients with Dr Lin talking you through the data on what they have found.

Have Your Say & Get Entered into $100 Prize Draw

We’d love to know if the conference served your needs. Do you have feedback to share with us that could help improve future events? Please complete the short questionnaire that has been sent to all attendees as your feedback is so important and all entrants get the chance to win a $100 Amazon voucher.

Please contact myhre@myhresyndrome.org if you need a new link to the survey.

Directory of Myhre Doctors & Clinicians

We’ve recently launched the MSF Directory. It gives patients, caregivers and family members information on professionals who have treated a Myhre patient.

The MSF Directory is an international resource and being updated as soon as we have verified details of a doctor who has been involved in the care of a Myhre patient.

Please contact us with your personal recommendations within your own care team, and we will contact them to request permission. Send details to myhre@myhresyndrome.org