President
Amber Denton
Contact: adenton@NBIAdisorders.org
Amber Denton, the current President of the NBIA Disorders Association, has been a dedicated advocate for NBIA disorders since 2017. Building on her previous roles as Vice President and Chair of the Development Committee, Amber now leads the organization full-time with a focus on advancing its mission and expanding its reach.
In her role as President, Denton oversees strategic direction and collaborates closely with the Board of Trustees. She builds relationships with industry and academic partners to facilitate research. She oversees crucial fundraising and awareness campaigns to ensure the organization's sustainability. Denton plays a key role in welcoming newly diagnosed families, ensuring they receive the support they need. She creates the organization’s newsletter to keep the community informed with the latest updates. She also helps to coordinate impactful family conferences to connect and support our community members.
Denton is proud to lead the organization and work alongside the many volunteers serving on specialized committees that help us make progress in finding treatments and ultimately cures for all NBIA disorders.
Research Program Director
Patricia Wood
Contact: pwood@NBIAdisorders.org
After 27 years as President of the NBIA Disorders Association, Patricia now serves as our part-time Research Program Director.
Patricia will continue to nurture research initiatives and facilitate collaboration with experts in the field, to sustain the momentum of progress in NBIA disorders research.
She will also be working closely with our NBIA Alliance members from around the world to collaborate on research initiatives and other ways to strengthen our collective impact and amplify the voices of those who rely on our support.
Administrative Assistant
Our part-time Administrative Assistant is vital to the smooth operation of our organization. Key responsibilities include managing accounts receivable, processing donor acknowledgments, preparing financial reports, and overseeing our data management system to ensure information is accurate and current.
Strong attention to detail and exceptional organizational skills are essential for supporting the organization and maintaining effective administrative functions.
