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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.”
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