September 5, 2015

Dear NBIA Community,

Do you have a skill, an area of expertise or a passion to help improve the lives of NBIA individuals and their loved ones? If so, the NBIA Disorders Association Board of Trustees wants you!

We are seeking applicants to our all-volunteer board of trustees as well as our development committee, which works on identifying potential donors and developing strategies to enhance our research fund and strengthen the organization’s work. And, as always, we need volunteers to help spread the word about NBIA and assist in other ways.

As you may know, we have a hands-on board whose members have backgrounds in health care, law, clinical trials, planning and communications.  We are looking for trustees with expertise in finance, management, nonprofit development, philanthropy, research and other skills that can help us attain our goals.  

Our board meets monthly and sets broad policies for the organization. It also works with researchers, oversees the association’s budget and plans family conferences, held every other year. Workload varies from two to six hours a month and can be more, depending on committee work and projects the organization is undertaking.

For the development committee, we are looking for members who have a strong interest or background in fundraising, including those with contacts to potential donors. This committee’s work is critical to moving us closer to our goal of finding a cure for all NBIA disorders.

If you are interested in serving on the board of trustees or our development committee, please send a short letter indicating which of these you wish to be considered for, why you’d like to serve and any skills you would bring to the table. Also, please include a resume, email address and phone number.

We appreciate your support of the organization and look forward to hearing from anyone interested in playing a more active, leadership role with us.

Please submit your application and any questions to info@NBIAdisorders.org or call 619 588-2315.

If you are interested in volunteering in other ways, such as helping to organize a regional meeting in your area, administrative help, raising awareness in your community, or other ideas you have, please contact us at Info@NBIAdisorders.org to explore how you might contribute. 

Thank you so much,


Patricia Wood, President

Mark Karakourtis, Board Chair