Myhre Adults, The Gift of Hope & Happy Holidays!

Tuesday December 21, 2021

Adults with Myhre - can you help?

Dr. Bert Callewaert at Ghent University Hospital, Belgium is actively studying the adults with Myhre Syndrome already reported in the literature. After this phase is complete, he will study novel or new adults that have not been reported before. That’s why we need you!

TWO adults 18 or older who register or update their info in December will be chosen to win a $150 VISA gift card.

To learn more about Dr. Bert Callewaert’s work you can view his talk on what we know about adults with Myhre Syndrome and what we still need to learn below. It’s also a place to learn about CoRDS and why patient registries are so important.

Don’t speak English? Contact us at research@myhresyndrome.org and we’ll see if we can help.

WATCH VIDEO CONTENT HERE

Can you give the Gift Of Hope this year?

We’re looking for our supporters to join us and become a regular donor. Monthly donations mean we can plan ahead - committing to more research, community support and medical outreach.

Finding a spare dollar/pound/euro a day can make a huge difference to our charity and by donating monthly it allows you to plan your expenditure too.

Plus, all monthly donors will receive an exclusive Myhre Syndrome lapel pin to wear with pride, knowing you are making a difference day-after-day, month-after-month.

LET’S DO IT

Giving Tuesday - sets a new record!

Our community might be rare, but wow do we have an amazing support network behind us.

On Giving Tuesday you all raised a staggering $15,532 that becomes $31,064 thanks to our kind donor who is matching your generosity.

It means everything that you're on this journey with us as we fund research, raise awareness, and support the Myhre community.

Warmest wishes to you all!

With only a few weeks left of 2021, we have been looking back on an incredible year. We held the first ever International MSF Virtual Conference that united Myhre experts and our Myhre community across the world.

The first dedicated Move for Myhre weekend was in September that will now be a regular event in our calendars as we celebrate our community and raise funds. New families have joined the Myhre community, and the support MSF has received this year continues to grow.

We are inspired and more determined than ever to get answers and improve the lives of those living with Myhre Syndrome and we thank you for your part in this journey. Here’s to 2022 and in the meantime, we wish you and your families a happy holiday.

Kate, Kathy, Justin, Ines, Patti, Jackie, Sandy, Don