By Miriam Bernard

What it all comes down to, according to NODCC founder Barbara Fonseca, is families gathering together to form a new type of community – a DCC community. As Barb aptly puts it, “It’s a place where you don’t have to explain yourself.” For a family member of a person with a DCC – a disorder many are not familiar with – this feels like a welcome break. That sentiment is where it all started in 2001 as a small assembly of just a few dozen families and individuals in the DCC community decided to become an official nonprofit to reach a wider swath of people and bring more resources to the DCC community.

Barb’s son Nate, now (24), was diagnosed with a DCC at nine months old. The Fonseca’s were fortunate
to be able to attend their first small family gathering shortly after diagnosis. It was the first time Barb and
her husband, Anthony, interacted with anyone else whose child had an DCC, and it was lifechanging. At
this gathering they met a family whose son was 9 years old. That family had plans to go to a gathering in Columbus, Ohio, and encouraged the Fonseca’s to attend. Their family understood how meaningful and
educational a trip like this would be and decided to pitch in to pay for them to attend the family gathering
in Ohio a month later.

That time in Ohio changed everything, and Barb knew she wanted to be involved. She offered to host the
next gathering near her home in Yorba Linda, California. At that time, events were nothing like the official conferences of the NODCC today. It took place at their local community center, and Barb and her family cooked spaghetti dinner for everyone in attendance. In 2003, that group achieved their 501C3 status, and the NODCC was officially born. Contrast that with the conventions of the last few years, attended by hundreds of people and epicenters for expert panels and specialized breakout groups, and you’ll have an inkling of how much the NODCC has grown in 20 years.

Still today, small gatherings are the lifeblood of the NODCC, because they are the literal origins of the
organization. Before conferences, before research committees and databases, it was just families, sitting down together, to enjoy food, share their life experiences, and “not have to explain themselves”. This is why the NODCC is excited to carry on and expand the important tradition of regional gatherings as they enter their next 20 years. What it all boils down to is having a community of people around you who support and understand you. Barb states, “We have developed lifelong friendships that we may not have experienced if we did not attend that first gathering. Our hope is that everyone can have the same opportunity.”

There are several areas in the country that need a passionate individual or small group ready to help host a regional gathering. Our team is ready to offer tips, tools, resources, and training to anyone interested in bringing regional gatherings to your area. Please reach out to us at with any questions or interest.

For more information on upcoming gatherings, please check the events section of NODCC newsletters, the
NODCC website or email
This article is the first in a limited series called “Celebrating 20 Years of the NODCC – 2003-2023” – keep your eyes open in future months this year for additional anniversary pieces looking back on the history and legacy of the NODCC. To learn more about Barb’s story, click here to see a video interview about Barb and her family featured on the NODCC YouTube channel.