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Boy1 has a rare genetic disorder called SETBP1. As of late 2025, there are only about 250 known cases worldwide (you can read more here: SETBP1.org). It’s not a well-known condition, but fortunately there’s a growing body of research being done. As a bit of a science and data nerd, I love this! I sign us up for as many research opportunities as possible. It feels important for our family to contribute however we can—both to support the field and to help improve outcomes for other families in the future.

Because Boy1 is adopted, it can sometimes be tricky to know whether he qualifies for certain studies, since we don’t have much information about his early life. Still, we do what we can, and I never hesitate to ask questions about eligibility. One boundary I’ve always been clear on is that we won’t participate in any study that could cause Boy1 distress or have potentially upsetting impacts—and thankfully, that situation hasn’t come up yet.

So far, we’ve taken part in a range of studies: some that were simply caregiver questionnaires, some that required an EEG, others focused on parents of children with rare disorders, and a few that involved DNA collection. For any study that requires Boy1’s participation, I always ask his permission first. He’s such a kind boy with a big heart, and he is always willing to help if it means others might benefit someday.

If your family has participated in research studies, I’d love to hear about your experiences. What helped you decide to say yes (or no) to certain opportunities?