Transforming Health Care through Innovative and Impactful Research

Amy Dublinske is the mother of a child with TSC - Kierstin, who was born in 2005, was diagnosed with the disease prenatally. At birth the family was told that Kierstin would never walk or talk and may be "mentally retarded." Since that time, she and her family have experienced a "roller coaster ride with many unexpected twists and turns," with "things going along smoothly" one day and Kiersten in intensive care the next.

A licensed therapist working in the field of child abuse, Amy dedicates a large amount of her spare time to TSC advocacy work. She is the chair of the Greater Kansas City branch of the TS alliance and has advocated for research both locally and in Washington, DC. She learned about the Tuberous Sclerosis Complex Research Program (TSCRP) through her advocacy work and eventually became a consumer peer reviewer for the program.

She has found her time as a consumer peer reviewer to be a very rewarding experience. She admits that she has a lot to learn but has a great, supportive team to work with. Amy observes that one of the most difficult aspects about reviewing proposals for the TSCRP is the knowledge that the availability of funding limits awards to only a small percentage of applications.

Through her involvement with TSCRP, Amy feels a strong commitment within the scientific community to improve the lives of individuals with TSC. She credits vast improvements in Kierstin's life to great strides in TSC research. While Kierstin has tumors all over her body, including her heart, eyes, kidney, face, gums, and brain, she has overcome significant hurdles and greatly surpassed her initial prognosis. Contrary to what her parents were told nine years ago, Kierstin is now able to walk, talk, run, sing, and read. It has been a difficult road, but, Amy remarks, "I truly believe that research has made a huge difference with Kierstin. I feel that the TSCRP is crucial to her future and the two million people battling TSC!"