THE WEEK of March 3 to March 7, I advocated on Capitol Hill. It was an experience like no other. Being able to witness the behind-the-scenes political machinery of our country was very exciting. I went to advocate for my cousin, Rosemary Briones, who has tuberous sclerosis complex (TSC). TSC is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin, and lungs.
She has moderate to severe TSC, and this causes her to have TAND (TSC-associated neuropsychiatric disorders). She is non-verbal and has autism and epilepsy. Something amazing about TSC is that it is a linchpin disease, meaning that it’s a genetic pathway to other diseases and disorders. This year, the TSC Alliance asked for the TSCRP (TSC Research Project) to go from $8 million in funding to $10 million or continued funding. We were asking for the National Institute of Health (NIH) budget, which is inside the Department of Defense (DOD) budget.
We went to seven congressional offices to ask for funding. My aunt is a constituent from California, and I’m a constituent from Utah. My sister and two of my cousins from California came as well. We went to the offices of two Utah congressmen, Congressman Blake Moore and Congressman Mike Kennedy. When we went to the Utah offices, we were accompanied by three other Utah constituents.
We entered each office and sat down — the only actual congressman that we met was Blake Moore, the rest were their aides — then my aunt went over the scientific and legal side of things as we listened. After that, we all shared experiences we have had with Rosy’s TSC. It was so cute to hear my little cousin talk about it, and at one point, I got a little emotional.
But I think my favorite part was hearing the scientific side of things because it fascinated me how it was such an interesting disease, yet nobody hears about it until they or someone they know has it. Other members of congress we spoke to were Luz M. Rivas, Raul Ruiz, Jay Obernolte, Ken Calvert, and Sydney Kamlager-Dove, who are all members of congress representing California.
Each office we went into was a whole new experience; the climate (the vibe) in each room was different. But it was fun to talk professionally about something I feel passionate about. It was highly uncomfortable when we first began to talk to them. Sometimes, they were uninterested in what we were saying, but no matter what, it was important for us to tell them how we felt.
The funding for the TSCRP is highly important because, thanks to it, my cousin has been seizure-free since 2017.
The medicine they developed has fully stopped her seizures and was FDA-approved just a few years ago. The seizures she was having when she was little caused her mental growth to stop. They are now giving this medicine to newborns who have TSC so that they may never have a seizure. Advocating for what you love and spreading awareness for those you love is an amazing way to show you care. I plan to go next year and cannot wait to advocate again up on Capitol Hill.
