Brittany Long
Founder & president
I can remember the day we received Liam’s diagnosis of ATR-X. The genetic counselor told me they didn’t really know much about it. She said we would become the experts and would probably know more about ATR-X than most doctors. She gave me a brief summary of the diagnosis and recommended I look into an ATR-X Facebook group and that was that. It is such a relief to know and be in contact with other families that are going through a similar situation, families that truly understand what it’s like to not only have a special needs child but one that has a syndrome that has limited information known about it. We came together and became great friends and family with many ATR-X families all over the world.
Nicole Rosendale
Vice President
When Danny began showing developmental delays, I was overwhelmed, lost in a place where few seemed to understand—and I wasn’t sure I even understood myself. But everything changed when we received his diagnosis. It didn’t close doors; it opened them. I found hope, connection, and guidance by reaching out to someone just a few steps ahead of me on this journey. Their support helped light my path forward. Now, I’m in a place where I can do the same—reach back, extend my hand, and walk alongside someone just beginning this journey. Because no one should have to walk it alone—and there is so much strength in walking it together.
Nathan Long
Secretary
With how unexpected this diagnosis is, it is nice to have others to turn to who have experienced similar paths.
Michelle Lunday
Treasurer
We are strong because we have community with our group. Each parent and member of our group has emotional, social, medical, and educational experiences that we can draw from to learn and grow as parents and families. These perspectives have given me the ability to move forward with confidence.
Cindi Edwards
Board Member
As special needs parents, we don’t have the power to make life “fair,” but we do have the power to make life joyful.
