Friday September 17, 2021

MSF International Grant Program Launches

This week we launched the first International Research Grant Program to support the advancement of knowledge of Myhre syndrome. The first grant of up to $100,000 is seeking applicants to conduct basic, pre-clinical, translational, and clinical research projects that investigate all aspects of Myhre syndrome. 

The program is possible thanks to your generous donations, and we look to the future with a huge amount of optimism as researchers can now continue to investigate how to improve the lives of people living with Myhre Syndrome and one day find a cure.

Rare Syndrome Clinics – Your Questions Answered

After receiving a rare diagnosis many people have more questions than answers and finding a team of experts within your rare field can be a challenge. Depending on the diagnosis there may be one or two centers of excellence or specialist clinics around the world. But what happens when this clinic is not in your country? How do you get access to the experts? What restrictions are in place that can limit these clinics?

These are just some of the questions we answer in this feature article.

Move for Myhre Weekend - 25 & 26 September

Mick is walking 100 miles, Mark is cycling 100 miles, Sally & Chris aka The Village Pedallers are cycling 50 miles, Leanne is making stained glass hummingbirds, Team Myhre Shenanigans is a group of Myhre community members meeting up, Becky is taking on an open water swim – wow, just a few of the amazing activities that are happening to celebrate the first international Move for Myhre weekend.

The Myhre community is also holding a virtual coffee hour taking place on Sunday 26 September with people from across the world coming together.

There is still time to create a fundraiser or why not donate to one of our fantastic team’s above.

Let’s Get Social…

You will find us on Facebook, Instagram, Twitter, LinkedIn & YouTube where each week we update with news and views, including the new ‘Did You Know’ series that seeks to give small snapshots and updates on all things Myhre.

We also want to hear from you – sharing stories and learning more about your journey helps us all. As we all know Myhre is a complex genetic disorder resulting in a spectrum of symptoms, so hearing about your experiences is so valuable.

Contact Kate who looks after our communications at kwears@myhresyndrome.org