In 2010, our kids asked us to attend the Moebius Conference in Denver with them so we could “babysit” for their kids. It was a transformative experience, and we’ve been fortunate to attend all subsequent Conferences.  One of my goals is to spread the word to Moebius families who may not have yet attended a Conference, to create funding that encourages and increases attendance, and to foster knowledge, comfort, and camaraderie as we work together to make our world a little bit better. 

Tell us your name and position (executive committee, staff, board member).
Bobby Medow, Board Member, Moebius Syndrome Foundation

Why is it important for you to serve on the Board of Directors?

The Foundation has played a key role in empowering and improving the lives of so many people with
Moebius and also their families. And our family has been touched profoundly by the educational and
emotional support of the Foundation. I am honored and grateful to serve on the Board, to work
collaboratively while building and expanding The Foundation’s reach as it enhances the well-being of
all impacted by Moebius.

In 2010 our kids asked us to attend the Moebius Conference in Denver with them so we could
“babysit” for their kids. It was a transformative experience, and we’ve been fortunate to attend all
subsequent Conferences. One of my goals is to spread the word to Moebius families who may not
have yet attended a Conference, to create funding that encourages and increases attendance, and to
foster knowledge, comfort, and camaraderie as we work together to make our world a little bit better.

What does the Moebius Syndrome Foundation mean to you, personally?

I was first introduced to the Moebius Syndrome Foundation over 20 years ago when our
granddaughter Miriam was born. Like many, we had never heard of the syndrome. Our family
experienced the incredible encouragement the Foundation provided for Miriam, her parents, and our
entire extended family. The support was not only scientific, through medical evaluations and
workshops — both provided at the Conference –, but also emotional, the “Just for Moms” and “Just for
Dads” sessions. The Conferences were life-changing, creating a new and larger Moebius Family for
us all and especially for Miriam, now in her early adulthood, as she builds a full and meaningful life.

What might the Moebius Syndrome Foundation community be interested to learn about
you?

I earned a Bachelor of Science in Education from Indiana University and a Master of Arts at the
University of Chicago. I spent 9 years in academia teaching high school and college and then
morphed into the financial world spending the last 20 years of my career with Merrill Lynch/Bank of
America. Over time, I have had the privilege of sitting on a number of community boards and headed
up 3 of them.

What do you want the Moebius syndrome community to know about the Board of Directors
and what we do?

The Board is your advocacy group: reach out, make suggestions, ask questions. The Board is
composed of volunteers who want to help the Foundation grow, become ever better, and serve our
Moebius Community well into the future. So, please, speak up!

Can community members reach out to you if they have any questions or comments about the
Foundation/ideas they may have?
Of course – please reach out to me with any questions: bobby@moebiussyndrome.org.

Email : bobby@moebiussyndrome.org