Your monthly update on Myhre Syndrome including news from our community and fundraising updates͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ 

Myhre Syndrome Foundation

Myhre Syndrome Foundation
 

Monday February 28, 2022

 

On Rare Diease Day, MSF awards $150,000

Today is Rare Disease Day, a global movement that raises awareness and generates change for the 300 million people worldwide living with a rare disease. It seemed fitting that today we have announced that we are awarding $150,000 in research grants to two awardees that will advance knowledge of Myhre syndrome.

Dr Bert Callewaert, Ghent University, Belgium, will establish a zebrafish model to determine the disease mechanisms and to test potential therapeutic therapies.

Dr Angela Lin and Dr Mark Lindsay, Massachusetts General Hospital, Boston, will define the cardiovascular phenotype in humans with Myhre syndrome and use a mouse model to examine the features of the cardiovascular manifestations to improve treatment and aid prevention.

Both proposals were commended on the potential impact to advance knowledge and treatment options for Myhre and provide longer term opportunities for development. The proposals also align with the priorities that the Myhre community identified.

Kathy Young, Myhre Syndrome Foundation Vice-President and Scientific Committee leader said, “We are delighted to award grants to two well established research institutions, this funding will move forward knowledge on incredibly important areas for Myhre syndrome. We are so grateful to everyone who supports the foundation, as you made this possible.”

 

Myhre community on Rare Disease Day

The Myhre community have been sharing their stories and photos over the last few weeks to help raise awareness. View all of their stories below and don’t miss April and her son Alec. April has been learning American Sign Language (ASL) to support Alec, and we think they’re both amazing.

 SEE OUR STORIES 
 VIEW VIDEO 
 

Summer Seminars

After the hugely successful MSF International Virtual Conference in 2021, the MSF events team are hard at work to bring you an exciting summer event. We’re at the planning stage and will keep you updated in the coming months on what we have in store. Stay tuned!

 

Don’t miss our new blog series - Myhre & Me

We’re delighted to introduce you to Patti Schultz as our new Myhre & Me blogger. She’s passionate about advocating for everyone with Myhre Syndrome. Her first step was joining the Myhre Syndrome Foundation board where she provides invaluable expertise from a personal and professional perspective.

Patti will be updating us each week on living with Myhre Syndrome and you can catch up on her blogs below.

 READ PATTI’S BLOG 
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Myhre Syndrome Foundation, 25 Creekwood Circle, Richardson, United States

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