November 2024
Dear Friends & Family,
This is Stefanie Clark — Lucas’ mom, for those of you who don’t know me. It’s been a while since I last reached out, but today, I’m writing with something very close to my heart. Our family has asked me to share this year’s appeal, and though I don’t find these things easy, I know how important it is to raise awareness about Fragile X syndrome.
So here I am.
Being the parent of a special needs child is like living in a world that few understand. Each day, you face an endless sea of acronyms—IEPs, SSI, IHSS, ILS—and this “acronym soup” becomes your life. It’s not just words; it’s navigating a maze of paperwork, appointments, and policies. But more than that, it’s managing the deep emotional weight of making sure your child gets every opportunity they deserve in a world that often forgets them.
And yet, for Lucas, I’d go to the ends of the earth. Every meeting, every phone call, every decision is a labor of love. But as much as I will always fight for him, there’s a quiet hope in my heart that one day, we won’t have to fight so hard. That one day, the world will be different for Lucas—simpler, less demanding, more kind. That one day, there will be a breakthrough that changes everything.
There is so much exciting research on the horizon, but the truth is that funding is desperately needed. That’s why FRAXA, the world’s best organization devoted to Fragile X syndrome, means so much to us. Run by families like ours, FRAXA is tirelessly working toward treatments and—dare we hope—a cure.
In the past, your kindness has lifted us, and we are so deeply grateful. This year, I humbly ask once again: if you’re able, please consider donating to FRAXA. Any amount helps, and every dollar brings us one step closer to the day we’ve been dreaming of.
With love and gratitude,
Stef
