Rebecca has 25 years of experience in sales and marketing for Novartis Pharmaceuticals Corporation and is currently an associate director of sales operations for the cardiovascular franchise. She holds a bachelor’s degree from the University of Illinois Urbana-Champaign, has attended Moebius Syndrome Foundation conferences since 2002, and is the mother of three children, including a 21-year-old daughter with Moebius syndrome.
Rebecca resides in Wesley Chapel, FL.
Tell us your name and position (executive committee, staff, board member).
Rebecca Maher, Secretary and member of the Moebius Syndrome Foundation (MSF) Executive Committee
Why is it important for you to serve on the Board of Directors?
It’s important for me to serve on the Board of Directors so that I can continue to “give back” to the Moebius community. When my family and I attended our first MSF conference in 2002, it was truly a life-changing experience. We were welcomed into a “family” and made lifelong connections that we cherish. By serving on the Board of Directors, I can be a part of a leadership team that not only helps shape opportunities for people with Moebius and their families but also helps pull through our mission to advocate for scientific research and to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.
What does the Moebius Syndrome Foundation mean to you, personally?
To me, the Moebius Syndrome Foundation is at the heart of our community. We provide support, education, and resources to people with Moebius and their families. The MSF and the conferences gave me and my family “hope” during a time of great uncertainty. When we were searching for answers, we found an entire “community” of love and support. Since attending our first MSF conference in 2002, we have only missed one. This organization has truly changed our lives, so we have dedicated personal time and resources to help other families.
What might the Moebius Syndrome Foundation community be interested to learn about you?
I have a 21-year-old daughter with Moebius syndrome (Jessica) as well as a 19-year-old daughter (Jacqueline), and a 16-year-old son (Jake). I have spent my entire career working for Novartis Pharmaceuticals and lived in multiple Midwest states before moving to Florida. When not working or spending time outdoors, you might find me cooking, doing paracord projects, or taking karate classes. Over the past several years, my family and I have volunteered and been heavily involved at numerous MSF conferences.
What do you want the Moebius syndrome community to know about the Board of Directors and what we do?
The Board of Directors is very diligent in our efforts to promote greater awareness and understanding of Moebius syndrome. We all come from a variety of backgrounds and experiences, but collectively are all passionate about finding more ways to help support our families. We collaborate extensively to plan events, provide helpful resources, evaluate various research opportunities, and strive to create a better community. We have various sub-committees for our projects and are proud of the progress we have made over the past several years.
Anything else you would like to add? Any long-term goals for the Foundation? Can community members reach out to you if they have any questions or comments about the Foundation/ideas they may have?
I am both honored and privileged to be part of the Board of Directors. We have ambitious fundraising goals this year, and I would personally like to see a future where people with Moebius syndrome and their families could attend conferences free of charge. I would also like to see the MSF use research funds to explore additional areas of interest to our community. Additionally, I would like to see us have a greater presence within the medical community by educating healthcare providers at various congresses. I am happy to discuss and share ideas with any of our community members.
Email : rebecca@moebiussyndrome.org