There’s no guarantees in Fatherhood — But I found a path to progress
When my daughter Jordyn was diagnosed with FD/MAS, she was just two years old. The first sign—a tell-tale birthmark paired with hormonal imbalances—led to the news that she had fibrous dysplasia, McCune-Albright syndrome (FD/MAS), a rare and often debilitating disease that affects bone and the hormones. My wife and I were already exhausted as new parents, and this diagnosis felt devastating.
We knew we had to divide and conquer. My wife focused on the day-to-day—doctors’ appointments, lab work, dealing with daycare—while I took on the big-picture question: What does Jordyn’s future look like? Not just tomorrow or next year, but 10, 15, or 30 years down the line?
That’s how I came to the FD/MAS Alliance and, soon after, joined the Board of Directors.
For 20 years, this community has driven real progress in research, community support, and advocacy. It was the FD/MAS Alliance’s resources I found in my late-night internet searches and their proven record of progress for the FD/MAS community that drove me to join the board.
But here’s the hard truth about our path to progress: None of it is guaranteed. Right now, medical research funding is at risk. Federal funding for rare disease research is being cut, and without strong advocacy, progress could stall. The treatments that once seemed within reach could slip further away.
Here’s another way to think about it: on any plane, the flight attendants remind parents to put their own oxygen masks on before helping others. FD/MAS Alliance can’t support others–advance new drug development, advocate for new therapy FDA approval, build networks of knowledgeable doctors and scientists–if we don’t have oxygen ourselves.
That’s why I’m asking you to join me in supporting the FD/MAS Alliance. Your gift today ensures that no family faces this diagnosis alone. It fuels research, protects advocacy efforts, and strengthens the community that has given us so much hope. Will you help secure the next 20 years of progress for families like ours?
With Gratitude,
Chris Guest
Jordyn’s Dad
Board Director and Treasurer
FD/MAS Alliance