Frequently Asked Questions
Q: My doctor has never heard of Myhre Syndrome. Are there clinical guidelines?
A: Evidence-based clinical management guidelines for any syndrome are developed by expert consensus, usually at a scientific meeting. Unfortunately this hasn’t happened yet but members of our professional advisory board are working hard on this. For now we encourage you to share the GeneReview with your healthcare providers as a proxy, and encourage them to take a look at the Resource Library for additional articles. They can even subscribe to our newsletter to be sure to be the first to receive pertinent updates.
Q: MSF…MGH…BOD…PAB. I can’t keep up with all these acronyms. What does it all mean?
A: Modern day acronyms sure can be confusing can’t they …“LOL”? Let’s see if this helps:
MSF - Myhre Syndrome Foundation (MSF) is an independent, non-profit foundation that supports research and advocacy for individuals living with Myhre syndrome.
BOD – The MSF Board of Directors (BOD) is responsible for overseeing the mission, goals and activities of MSF including strategic planning, fundraising administration and financial management. Members of the BOD are elected to represent key knowledge areas for a rare disease foundation including healthcare, finance, legal affairs, fundraising and patient partnership.
PAB – The MSF Board of Directors is supported by an international Professional Advisory Board made up of doctors, healthcare professionals and scientists involved in research and treatment of individuals living with Myhre syndrome. The PAB serves as an advisory resource on scientific and medical issues.
MGH - The Massachusetts General Hospital is a Harvard Medical School affiliated hospital in Boston that currently houses the only dedicated multidisciplinary Myhre Syndrome Clinic in the world. MSF is not directly affiliated with this clinic but remains a proud partner of this team who shares the common goal of helping Myhre individuals live their best lives. We are fortunate to benefit from the knowledge of MGH Myhre syndrome experts on the MSF professional advisory board.
Q: MSF is an American foundation?
A: MSF is registered in the USA as any non-profit needs to be localized for tax purposes. But in the rare disease world, we know gains will only be made by rallying and representing our community across the world. That’s why members of our Board of Directors and Professional Advisory Board (PAB) are international. In fact, our PAB includes researchers and medical professionals from four different countries! Because research findings benefit individuals everywhere, MSF accepts research funding requests from any country.
Q: Why are there so few articles available in the MSF Resource Library? I know there’s more information about Myhre out there!
A: You are right. If you are anything like us, you have probably googled Myhre on every search engine out there. We know that as a person or parent of someone living with Myhre, information is power. In order to be sure you are getting your hands on accurate information, the resources listed here have been vetted by our professional advisory board. For copyright reasons we can’t always include the full article but many of these are available through your local university libraries.
Q: My family are donating to MSF - where will their money go?
A: All fundraising goes directly to support pertinent research projects and care initiatives aimed at expanding clinical knowledge and optimizing care for individuals living with Myhre Syndrome worldwide.
Q: Who can apply for funding?
A: Any university affiliated researcher from any country seeking funds to further a research project on a subject of pertinence to Myhre Syndrome. All applications are reviewed by the board of directors and scored on standardized criteria. Application guidelines can be obtained by contacting MSF at myhre@myhresyndrome.org.
Q: How can I get involved?
A: As a not-for-profit organization, MSF is always looking for motivated volunteers to help us in our mission. At this time our greatest need is donors. We are only able to support research as far as our funds will stretch. Got a wild and crazy fundraising idea? Contact us! Got a compelling personal Myhre story to share in our blog? Contact us! Want to help spread the word? Contact us!
Q: How can I be sure to keep up to date on the latest MSF news?
A: With our community spread out around the globe we have lots of ways you can stay connected. Follow our social media pages on Instagram, Facebook, Twitter, LinkedIn and don’t forget to subscribe to our Newsletter to receive updates by email.
Q: What if I have more questions?
A: No problem! We love connecting with our community. Drop us a note at info@myhresyndrome.org and let’s chat!