Move for Myhre raised…

Monday October 18, 2021

Move For Myhre - the first of many!

What a fantastic weekend we had on 25 & 26 September. The first international Move for Myhre event had so many highlights. We saw the community reach for that finishing line with many personal sporting challenges achieved. It marked the beginning of personal friendships as the Myhre community came together for the start of their monthly Coffee Hour's. Plus, Holli, Patti and Katie got to meet for the first time at their Myhre meet-up.

Patti Stahl summed it up perfectly "To say that today's bake sale for the FIRST ANNUAL Move For MYHRE by Team Clark was a success would be an understatement. This proud Grandma was overwhelmed all day long. I had my first emotional reaction when the Cherry Hill Fire Company arrived to support our #myhrewarrior. What an incredible neighborhood, filled with kind, generous people. Myhre Syndrome Foundation, Team Clark had a blast, looking forward to next year's Move for Myhre Event! Thanks all!"

In the lead up to the weekend and throughout the two special days, over $9600 was raised, but it’s not just about the donations, the awareness raised with each Myhre event is invaluable. We're excited for next year, put it in your diaries…
24 & 25 September 2022

Immunity Research - can you help?

A common question is whether people with Myhre syndrome have an associated immunity problem. We know many get colds or ear infections, but at present, a consistent immune defect has not been discovered. The National Institutes of Health (NIH) is therefore conducting a study to understand how the immune system is affected in patients with Myhre syndrome.

Can you help? Visit the link below to see all the information regarding the study and how you can get involved, as well as options if you aren't able to travel.

READ ARTICLE HERE

Dr Lin presents Myhre Clinic findings - a must-see!

MassGeneral Hospital in Boston, USA is home to the Myhre Syndrome Clinic. It’s co-directed by Dr. Angela Lin who has given a video presentation on the findings from this clinic. You will hear and see statistics for the 40+ patients they have seen. The Myhre Syndrome community is small, so these findings are invaluable in building a picture of symptoms and treatment options.

WATCH THE VIDEO HERE

LEARN MORE ABOUT THE MYHRE CLINIC

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