Wednesday November 17, 2021

Giving Tuesday - Double Your Donation - 30 Nov

The biggest day of generosity is nearly here and this year your donation will be doubled! Every donation on Tuesday 30 November will be matched by a generous donor. All funds go towards advancing research of Myhre Syndrome so that we can learn more, and most importantly, find ways to help stop the progression of this very complex condition. 

Almost every body system can be affected by Myhre and throughout our community, some people have mild symptoms and others very severe. Your money helps us get answers.

Thank you for all you do, it is a collective effort in making change and we are proud to have such a passionate support network. 

New President - Kate Wears

Kathy Young, Vice-President said, “Justin is a founding member of MSF and has been instrumental in the success of the foundation that has seen us achieve 501c charity status, a patient registry, the first international MSF virtual conference and a grant program.” 

Kate from the UK, but now living in San Francisco, is mum to Josh, three, who was diagnosed in 2020. A member of the board since 2020, she brings to the role extensive experience in strategy and communications having worked in numerous marketing roles over a 17-year career across business and agency positions. 

Justin is thankfully not leaving the board but taking a step back, Kate said “I’m so honored to be taking on this role, Justin has done such a fantastic job in establishing the foundation and I’m excited to now build on these achievements. As a board we are united in our ambition to move forward research and advocate for our rare community. In the coming months, the first Myhre Syndrome Foundation research grant will be awarded, and we have big plans for 2022 and beyond.” 

Patti’s Myhre Clinic Update

Looking To The Future - Volunteers Needed

The MSF board met in person for the first time in two years in November and spent two days discussing plans for 2022 and beyond. Lots of work has been going on behind the scenes with research, campaign planning and fundraising to name a few of the items. 

There are many exciting things we’d like to accomplish but it was clear we need help. Do you have a few hours a month to help us with writing articles, planning fundraising campaigns, updating our database, or helping with an event? 

All skill sets are needed as we scale-up our ambition and no previous non-profit experience is necessary. We welcome volunteers from around the world. If you want to make a real difference to the Myhre community contact info@myhresyndrome.org