The people behind the Foundation - The Marfan Foundation

Life with Marfan : An Interview with Michael Weamer

We were lucky enough to have a conversation with Michael Weamer, President and CEO of The Marfan Foundation. The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. Michael talked with us about the importance of having a support system, what he would tell families struggling with a new Marfan diagnosis, and the most challenging (and rewarding) parts of his work. Yael

Why is it important for people living with Marfan syndrome to have a strong support system, both inside and outside the family?

Connections are important for everyone living with Marfan syndrome and related disorders. It is so valuable for a person living with one of these conditions to have someone to relate to, to share experiences, to know they are not alone. A strong support network can help people deal with medical challenges as they arise having someone who has gone through it before, who can answer practical questions, and who can share a first person experience can take away the fear and build confidence. On a regular basis, being able to connect with other people on the same medical journey can help someone cope with day-to-day issues, empower them, and build their self-esteem.

What can they do to better prepare for life with a Marfan diagnosis?

Once someone (or their child or spouse) is diagnosed with Marfan or one of the related conditions, there are a few things that they can do.

- Get connected to The Marfan Foundation for up-to-date medical information and to get involved in a warm and welcoming community.

- Participate in the Foundations online communities to make connections and build relationships for new friends and for support when necessary.

- Try to connect with community in real life at a local community group event, an educational symposium, or at the Foundations annual conference, which has programs for every age group.

While some of the information about Marfan syndrome and related disorders can be scary, knowledge is power. Through the Foundation, learn about the medical aspects of the condition from the medical experts and learn how to prevent serious complications. Your life will be enriched by the relationships you create with other members of the Marfan and related disorders community so much so that many of them call it a Marfamily.

What is your foundations most used resource? Medical advice/Research participation/ Financial aid?

When people are first diagnosed and when they are facing medical challenges, they find The Marfan Foundations informational resources most valuable our website (Marfan.org), which has extensive information, including free downloadable fact sheets; our Help & Resource Center, which is staffed by a nurse who answers phone and email inquiries every day; our three-day annual conference which features the countrys leading medical experts on Marfan syndrome; and our one-day regional symposiums which bring a mini annual conference to locations throughout the U.S. every year. Then, whether they are new to Marfan and related disorder or have been dealing with their diagnosis for a long time, they benefit from connections they create in the community. The friendships they make with others who have similar experiences are priceless. These relationships are so important when you have a relatively uncommon condition. Weve seen how not only are people living longer, but when they are connected to community, there are also a lot happier.

Has technology changed the way people are connecting with each other and sharing information about Marfan syndrome management? How is your foundation putting new technology to work?

The Marfan Foundation offers both online communities and face-to-face communities to give people an opportunity to connect with others. Sometimes, time, distance, and finances prevent people from connecting in person; in other situations, physical challenges make it hard to travel. Online connections are critical because people are there to connect at any time of day or night. The Marfan Foundation has a robust social media presence, most notably with a large, engaged Facebook community. The Foundation also connects with people on Twitter and Instagram. In addition, young people like to follow the Foundation on Snapchat and get an inside look at events around the country. For those who are not comfortable on social media, the Foundation has its own proprietary community called Connect, where people can create a profile, join groups, ask questions, and have a discussion.

What do you consider to be the most profound/inspiring part of your work?

The individuals and families who live with Marfan and related disorders community are the most inspiring aspect of every day. They deal with challenges bravely and then turn around to help others --- they are out there creating public awareness, educating doctors, enrolling in research studies. They are there for others who need to connect with someone who understands or lend a shoulder to cry on. Weve seen children and teens with these conditions grow up, overcome various medical issues, and go on to become leaders in our community. Its incredible.

Anything else youd like to share about your experience?

Creating connections is not just about families. The Marfan and related disorders community has caring, committed specialists nationwide who provide outstanding healthcare and continue to drive forward critical research studies.They freely volunteer their time on behalf of the Foundation so they can directly support our patient community. Together, the patients, doctors, and scientists are committed to creating a brighter future for everyone with Marfan syndrome and related disorders. It is truly Marfan Magic!