Participant Testimonials

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.

When I first heard about the study I was absolutely sold on taking part, as when we first found out about our little Accer the research out there was so limited we wanted to help future parents in our position. It was also a wonderful chance to chat through our son’s development, share concerns, joys and tribulations. Jasmin and the team are so supportive, caring and really go the extra mile. I can’t recommend this experience highly enough!!!!! You should definitely take part!

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.

Dominican Republic

 

We’ve been doing this re: our son Caden, super easy process so far!  So happy there’s a study being done!

Pennsylvania