Participant Testimonials

Hear from our participants

Read what other parents with children diagnosed with Dysgenesis of the Corpus Callosum have to say about participating in our study.

Our experience visiting UMN was nothing but positive – travel and accommodations were booked for us and it made the trip an easy yes for us.  Sam had a fun day testing with Dr. Haisley and her team and Daniel and I greatly appreciated being able to discuss Sam and ACC with people who have specific knowledge about Sam’s condition.  We received a write up of the test results from Dr. Haisley after the trip and we chose to share this information with our Early Intervention team of speech, occupational, and physical therapists.  They have all commented how helpful it was to read and include in Sam’s plan of care.  Thank you again for your time and care with our family.

Katie and Daniel Clements

To the Minnesota Team – I wanted to follow up to thank you for helping my child through a big day. My child was very comfortable with Lana and Dr. Haisley, and we appreciate all that you did to make our visit a success, and for coordinating flights and accommodations. We had a great time and thank you for the opportunity to be part of the 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