One month after our amazing, incredible, heart burstingly beautiful inaugural gala to benefit The Frontotemporal Disorders Unit at the Boston Harbor Hotel, and only days before Thanksgiving, I am thinking a lot about gratitude. Gratitude for every pledge of support, every word of encouragement and every congratulatory hug. Standing at the podium with Dr. Dickerson, I was privileged to a humbling view looking out at a room full of friends and colleagues raising paddles high in the air, banners of hope that the cure of tomorrow is not so far away.
The gala felt big. Bigger than big. It felt epic. For me, it was a turning point in our movement. A turning point dressed up in tuxedos and sequins with big band music, glasses of champagne and laughter on the dance floor. Brain images sprinkled with sparkles and research data punctuated by rounds of applause. It was a night where FTD stayed in the shadows and our community was in the spotlight. I carried that spotlight home with me and tried to tell Noah about the magic of the night. He listened for a few moments, but I felt pretty sure that my recounting was unremarkable.
Noah and I were alone in the car and headed to the grocery store with a mission to find peppermint ice cream. He always asks me questions while I drive, so I didn’t think too much of it when his little voice piped over the radio “Mom, how do you get famous?” I started talking about athletes and movie stars who worked hard to have important careers when he interrupted me, “Well, you are going to be famous.” That got my attention.
“Noah, what do you mean?” I asked. “Because of FTD” he replied. “You are working so hard. You planned a gala. You made a TV show. You were on the radio. That makes people famous.” By all accounts, Noah was right. I did make a short film this past spring with four students from Boston University (over 1,000 YouTube views!) and Noah and I were interviewed on our Hometown AM radio station before Rare Disease Day last February (he loved pushing all the console buttons and later telling his friends that he was “on air.”) While I appreciate Noah’s belief that I will one day find Kardashian-level stardom, it was his acknowledgement of my hard work that felt like my very own academy award.
I am humbled by every donor who supported our gala through sponsorships, online donations and gifts that are still coming in. Mostly, I am grateful that the biggest little person in my life noticed how much of myself I give to my work. To every scientist, researcher and clinician who stays up late at night thinking of our community and how to create the cure of tomorrow, I want you to hear this: Your passion is noticed. Families know you care. We believe in you. We are grateful you are on this journey with us. Keep going!
With Love & Appreciation, Happy Thanksgiving