Every two years there is a shift in leadership here at the Joubert Syndrome and Related Disorders Foundation. New members are elected to the Board of Directors, and we say thank you to the wonderful people who have served two terms and are now cycling off of the team.
As we prepare to announce new board members at the 2017 Family and Scientific Conference, we wanted to take a moment to celebrate some of the board members who are leaving. These individuals have all volunteered their time, talents and vision in service of our community. We asked them to reflect on their terms, and why this work has been meaningful to them. Here is what they had to share.
Pete Asman
Role: Treasurer
What I am most proud of achieving on the board: Continuing with necessary financial functions (deposits, payments, budgets, tax forms), and implementing a conflict of interest policy.
What I love most about the JSRDF: I love that the foundation does all it can to support people who have Joubert Syndrome and their families. Connecting people to others who are willing to share their experience and thoughts, or just listen.
T. Brett Elliott
Role: JSRDF Board member & Scientific Committee Chair
What I am most proud of achieving on the board: Most proud achievement, reviving the scientific committee and bringing continually updated information to families from many countries in many different languages.
What I love most about the JSRDF: I love the family. Even in other special needs groups I’ve seen there is a significant amount of drama but not here, not our family, it is an amazing community truly here to help each other without judgment. We celebrate together and mourn together as one.
Nicole Ford
Role: Board Member
What I am most proud of achieving on the board: Just honored to be allowed to work with a great group of parents and family members who all share the same passion with the same goals in mind. It was an honor just to be a part of the board during a time that the organization is growing in leaps and bounds and has begun to make some positive changes.
What I love most about the JSRDF: Commitment to families, research, and sharing of knowledge and experiences.
Ched Heiss
Role: Board Member
What I am most proud of achieving on the board: During my time on the board, I had the opportunity to take part in a number of activities that directly affected the bright future of our amazing foundation. We oversaw the development and execution of JS Life, constructed new needed many board policies and updated others, rolled out a new website and our amazing logo and a ton of other things. While all of those things and others were enough to make my time on the board worth it, the part I am most proud of was being able to play an integral part in ensuring that the core of our foundation maintained its most important purpose; to offer love and support for all of the wonderful people in the JS community. I feel confident that the decisions made over the last 4 years have always kept this end in mind and at the forefront of determining where the foundation is headed!
What I love most about the JSRDF: I love the people. Groups and support and activities and research and whatever else all come back to the people. And we have some great people! Can’t wait to see everyone in Phoenix!
Stephen Mack
Role: President-elect/President/Past President (6 year term)
What I am most proud of achieving on the board: I am profoundly proud of the way in which we have taken the Foundation from a relatively small organization to a growing and influential rare disease advocacy group dedicated to our families.
What I love most about the JSRDF: In my life, since Isabella was born, I have always said her before she was born I never knew any of our fellow JS families, and now I cannot imagine my life without any of you. The sense of community and family is amazing and unforgettable.
On behalf of the entire Joubert Syndrome and Related Disorders Foundation community, we thank you, Pete, Brett, Nicole, Ched, and Stephen for your service!
