DANCING FOR MY MOM

I’m honored to be participating as one of the celebrity dancers in DC’s Dancing Stars Gala, and for me, this experience is deeply personal. I’m dancing in honor of my mom, who absolutely loved to dance. She loved music, movement, and the joy that came with it, so when I had the opportunity to take part in this event, it felt like an especially meaningful way to celebrate her life while raising awareness for a disease that has affected three generations of my family.

In 2014, I lost my mother to complications related to Fabry disease, a rare inherited genetic disorder. After her passing, I learned that I had inherited the disease as well, and because Fabry is genetic, my diagnosis also led to testing for my daughter, Farrah, who was subsequently found to have inherited it too. I have experienced Fabry as a daughter who lost her mother, as a patient navigating my own diagnosis, and as a mother thinking about what it may mean for my daughter’s future. That perspective has made raising awareness about genetic testing, early diagnosis, continued research, and advocating for your own health incredibly important to me.

For me, DC's Dancing Stars Gala is about much more than learning a dance or taking the stage. It is an opportunity to honor my mom in a way I know she would have loved, while using my voice to help others learn more about Fabry disease and support families affected by rare disease. If sharing our family’s story helps even one person ask a question, seek testing, or find answers sooner, it is worth it. I’m dancing for my mom, for my daughter, and for every family whose life has been touched by Fabry disease — and I have a feeling my mom would be very happy to see me out there dancing.