By Jennifer Little

As the emcee of the Disorders of the Corpus Conference for the last several conferences, I enjoy our “opening ceremonies” so much. We welcome attendees, make introductions, and set the stage for the weekend. It’s powerful to be in a room where everyone gets it!

It’s during this time that we see how many conferences that people have attended and the individuals and families who have joined us for the first time. While we have families who make a family vacation out of conference year after year, the reality is that half of the attendees are joining us for their first conference.

To help make sure we are communicating what to expect and help everyone feel comfortable joining us, I asked a few parents, who attended conference for the first time in 2016 and 2018, for their perspective and advice. Below is the collection of those responses.

Q: Why did you want to attend (what were thoughts before attending)?

Parent Responses:

  • Wanted my son to meet someone like him – someone for him to connect with
  • We wanted to help our child make some “brain buddies”
  • I was uncertain what to expect and was nervous about attending. I was hoping to gain more information from others sharing, as well as from seminars, and hearing things that could improve my son’s quality of life.
  • We were just hoping to meet others who had been in the situation longer than us. We wanted to learn more about the disorder, get advice, and meet others.
  • We didn’t really have any idea. We knew about the class offerings, but not much beyond that. We had no expectations at all.

Q: What information/sessions were most helpful?

Parent Responses:

  • Topics on schooling. Public vs. private and continuing to college.
  • The basics of ACC, behavior challenges with Dr. Paul, and a genetic session with Dr. Sherr
  • The very first session with families who had kids the same age was great
  • The general sessions on the diagnoses and age-appropriate expectations

Q: What was most beneficial overall?

Parent Responses:

  • It’s great to meet a family that has a child a little older that you can learn from
  • The most beneficial aspect of the conference was talking and hearing from other families. Our daughter was only 2 at the time and we were early in the process. We appreciated hearing about the successes and challenges of the older kids and/or adults with ACC. We had no idea what life could look like for our daughter as she grows.
  • We had a really meaningful conversation with another mom and her family at breakfast before the first day started. She shared how we would feel all sorts of emotions during our first experience and to reach out to other families. Her kindness was invaluable, and it was the first time I had met someone who just got everything we had been going through.
  • Meeting families who are going through the same thing without having to explain our son

Q: What advice do you have for families/individuals considering attending?

Parent Responses:

  • For those considering attending, COME! I was worried about what I may learn about the diagnosis and was pleasantly surprised to see may others with this diagnosis that are independently functioning.
  • It is a very worthwhile and meaningful experience. You connect with others who just get it and learn so much about the disorder.
  • It’s the best place to come to meet other families going through the same thing you are without having to explain things over and over again. It’s also a great place to learn ways and get different ideas on how to best care for you child and your family.

Q: What other tips can you share?

Parent Responses:

  • Take breaks between sessions to gather your thoughts. Know that you will go through so many emotions the first time.
  • Connect with other families and/or adults and share contact info.
  • Each individual is different, and they reach their milestones at different times. Don’t give up on them. Stay the course.
  • Come with an open mind and you will be blessed.

We know that attending conference is an investment, and we want to encourage you to join us to connect face-to-face with others who understand your journey. While it can be emotional, it will also be an educational, worthwhile and rewarding experience to know you and your family are not alone.

If you have any questions or concerns about the upcoming conference, please reach out to our office at so we can respond and answer your questions. To learn more about the 2022 NODCC Conference in July, visit the conference details and registration page on the Upcoming Conference section of our website.