03/01/2025
Did you know that February 28th is Rare Disease Day?
Rare diseases affect over 300 million people worldwide, yet many of these conditions remain poorly understood, under-researched, and difficult to diagnose.
Today, I want to share a personal story about my son and business partner, Linden, who has been living with a rare disease called aggressive fibromatosis (Desmoid tumors) since he was 6 years old. He wasn’t officially diagnosed until age 11, after years of waiting and watching what we were told was a cyst, and the uncertainty, testing, and searching for answers.
We knew, after meeting with Linden’s oncologist for the first of many years of appointments with him, just how rare Linden’s disease was when we spoke with him. He only knew of one other patient with the same disease. It was very concerning to our family with so many unanswered questions and little information on this rare disease.
Like many rare disease patients, Linden’s journey has been anything but straightforward. He has endured multiple treatments, setbacks, and challenges, all while fighting for the right care. And as his parent, we’ve had to become his biggest advocate—researching, connecting with specialists, and pushing for options that local healthcare professionals weren’t familiar with.
Through my research, I found the Desmoid Tumor Research Foundation and a support group filled with patients, caregivers, and medical professionals. These resources made a world of difference in helping us find some answers and direction to the right care. But not every patient or family has that same access or awareness. That’s why Rare Disease Day is so important—to spread knowledge, encourage research, and support the people living with these conditions every day.
💜 To all the rare warriors, caregivers, and families—you are not alone. Keep advocating, keep pushing, and keep fighting.