Tell us your name and position.

My name is Jenny Whitman, and I have the honor of being the Executive Director of the Moebius Syndrome Foundation.

Why is it important for you to serve with the Moebius Syndrome Foundation?

Serving in this capacity has been such a wonderful experience. I’ve learned so much from not only the Board of Directors I serve with, but from the Moebius community. My understanding about the various needs and hopes of people and families affected by Moebius syndrome grows daily, and this inspires me to work even harder to fulfill our mission and be a credit to the Foundation.

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

The Moebius Syndrome Foundation is an organization that stands for hope; hope for more equality in the disability community, hope for greater understanding about the cause and best treatment for Moebius syndrome and its common symptoms, hope that through advocacy and awareness we can educate the world about Moebius syndrome, and an overall hope that we can help provide a better future for those whom we serve. Our decades of work have allowed our hopes and dreams to become a reality and given us the ability to continue to serve the Moebius community for decades to come.

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

I have a big heart and love the people whom I am privileged to serve and work with. Growing up with a sibling that has a serious disability gave me a desire to help others that are struggling with misconceptions about the abilities and value that people with differences offer this world. People with disabilities and differences often have many other gifts and learned experiences that are unique to them, and can bring so much value to families, relationships, employers, and society in general. I am also a passionate advocate for animal and other human rights causes.

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

Our Board of Directors, both past and present, are a group of selfless, compassionate, and determined individuals that volunteer their time because this work is so important to them. Whether it is because they are a parent to a child with Moebius syndrome, or and adult born with Moebius syndrome, our diverse Board members each has a unique vision that is supported by their talents, professional skills, and a desire to help members of our special community. I want others to know how many countless hours our Board members spend thinking about the best ways that the Foundation can help others and move our work forward. They are a part of the Board for all the right reasons!

Anything else you would like to mention? Do you have any long-term goals for the Foundation? Can community members reach out to you if they have any questions, comments, or ideas about the Foundation?

My long-term goals for the Moebius Syndrome Foundation are to continue to help our organization grow and serve in a sustainable way. I want our community members to feel like they are each a very important part of the Foundation’s work, because they are. We could not do this without the support of the people we serve, and without the kind support of so many that give of their time and resources. Each of our members that volunteers, makes a donation in any amount, spreads awareness about Moebius syndrome, or even just shares one of our social media messages is helping us more than they know. I want people to know that I am in this for the long-haul, and I invite everyone to join this exciting journey.

Please feel free to reach out to me at any time.