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Meet the New President of the PURA Syndrome Foundation


The PURA Syndrome Foundation is pleased to announce the appointment of Amanda Shanks as President of the Board of Directors for a term of three years. Dominic Spadafore, who faithfully served as board president for the last four years, will remain on the Board of Directors in the role of Past-President for a term of one year.

As President, Amanda is responsible for the strategic leadership and direction of the PURA Syndrome Foundation. She has been actively involved in the organization for the past two years as the Director of Fundraising, creating an annual World Rare Disease Day fundraising campaign, establishing an International PURA Syndrome Awareness Campaign, and actively participating in the planning and execution of our largest parent-led fundraising events, including A PURA Perfect Night in Chicago, Illinois, and a PURA Perfect Soul Cycle Event in New York, New York. Under her leadership, the Foundation saw a significant increase in peer-to-peer fundraisers conducted by friends and supporters of the PURA Syndrome Foundation and an increase in overall donations to the Foundation. Recognizing the importance of communication with the PURA community and our donors, she also created and launched a newsletter for the Foundation, Spotlight on PURA Syndrome (click HERE to subscribe)

Passionate about rare disease and disability awareness, Amanda has attended conferences through Global Genes, NORD, and the EveryLife Foundation. She is a founding member of the Rare and Undiagnosed Network of Charlotte (RUNCharlotte), leader of the Charlotte World Rare Disease Day Rally, Elder at Avondale Presbyterian Church, and occasionally blogs about issues related to rare disease and disability. Amanda’s daughter, Taylor, was diagnosed with PURA Syndrome in 2018 at the age of 2.5. She is a Licensed Clinical Mental Health Therapist and owns a private practice based out of Charlotte, NC, USA. Prior to starting her own practice, she worked at the Charlotte-Mecklenburg County Jail, providing mental health care for detainees.


Amanda is excited to engage the Board of Directors in strategic planning, strengthen existing connections with researchers and clinicians interested in researching and treating PURA Syndrome, evaluate and identify needs of the PURA community, and network and connect with families, friends, donors, researchers, and other rare disease organizations. If you have feedback, questions, or concerns, please do not hesitate to contact Amanda via email at a.shanks@pura-syndrome.org.





The PURA Syndrome Foundation


The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .