Hear from our participants
Read what other parents with children diagnosed with Agenesis of the Corpus Callosum have to say about participating in our study.
United Kingdom, May 2022
I have to admit that my first thought when I enrolled was to get more answers and “solutions” for myself on how to deal with my child’s pACC, but after reading the disclaimers, I decided to do it with the intention of helping future parents and kids with ACC. Participation was actually pretty easy. Sometimes I had to force my memory to figure out some answers, even when I tried to document as much as I could along the journey with my kid, so it was helpful to recall all this information and also I could really prove to myself that my child was and is, improving his development, even when it’s not at an average pace, I can see he will get there. I had a great experience, this is the first time I participated in research, but considering that we don’t live in the US, that we are not North American, our main language is not English, it was in fact, a very inclusive research. I had to Google some terms of course, but not too hard at all.
We’ve been doing this re: our son Caden, super easy process so far! So happy there’s a study being done!