When my daughter Nell was 10 months old, I noticed a new, “reverse birthmark” on her face. I am a nurse practitioner and began searching for a diagnosis, knowing people do not suddenly get new birthmarks. I ruled out everything but Tuberous Sclerosis Complex (TSC) because I was not familiar with the disease. It took my family 6 months to find a specialist and confirm the diagnosis. Since then, Nell has been mildly affected by the disease.

The TSC Alliance was crucial in helping find a specialist for Nell, and I have been involved with them since 2016. Since that time, I have acted as a Community Chair and helped with fundraising and advocacy. The work that the TSC Alliance does is amazing! The Alliance is involved in all things TSC and is always pivoting to meet the needs of our community.

The TSC Alliance nominated me to be a consumer reviewer for the Department of Defense Tuberous Sclerosis Complex Research Program (TSCRP) peer review panel for fiscal year 2021, and it has been a wonderful experience. I have participated as a consumer reviewer for 2 years. The first year I had an incredible TSC friend as a mentor, and this year I was able to mentor someone myself. It is great to see the passion that the scientific community has for TSC, and I am always amazed at the research proposals that I review. The scientists are so intelligent, and they truly understand the hardships of TSC, both of which drive the science. The researchers are excellent about explaining the science and specific details. In turn, they value our opinions as TSC-affected families.

TSC has changed our life, driving us to advocacy and finding a cure for TSC, not only for our daughter and potential grandchildren, but also all those with whom I have become close through this TSC journey.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy or decision.