As president and founder of the organization, she has worked as a volunteer for the organization since its inception in 1996. She is responsible for the day-to-day running of the organization, research grant administration, family support, organizing biannual family conferences and serving as the liaison with other organizations and medical professionals.
In 2012 she began receiving a small stipend as part of the European Union funded grant called Treat Iron-Related Childhood-Onset Neurodegeneration (TIRCON) for grant related dissemination activities. Some of these activities are the preparation of information packages on NBIA for clinicians, the scientific community and families; creating alliances with other NBIA lay advocacy organizations; implementing an educational protocol for training workshops on NBIA disorders and informing the public about TIRCON activities and results.
In 2014, she began receiving payment as a part-time emplyee. Her responsibilites continue as president and an officer of the organization, but she is no longer a voting member of the Board of Trustees.
Lindsey Zipkin joined our organization in July, 2014. Her primary goal as Development Director is to increase funding to further our mission of curing NBIA disorders and supporting NBIA families. Her work will encompass all facets of fundraising, including individual giving, planned giving, our annual Community Campaign, NBIA Disorders Association fundraising events and grant writing. She will work with our newly formed Development Committee and will be a liaison for all family fundraisers and current, former and prospective donors to the organization.
Our Volunteer Directors work tirelessly to help advance the organization’s goals.
Our Social Media Director handles our Facebook, Twitter and YouTube accounts, ensuring that they are up-to-date and useful to the NBIA community.
Our Director of Adult Programs who is an adult with NBIA, acts as a mentor and leader for other adult NBIA individuals. He plans special activities at our family conferences to engage the adults and works to promote NBIA awareness with various volunteer activities.
Our Director of Planned Giving is the mother of a NBIA child and a lawyer who specializes in estate planning. Her expertise is helpful to our NBIA families interested in making bequests and she works closely with our Development Director.
Our organization could not run without the help of all of our other volunteers who aid our cause. From clerical help, advocacy efforts, family conference planning, to family fundraisers for NBIA research, our NBIA families and friends are vital to our success.