How ACCer and Mom, Katherine Gee, Has Become an Model of Hospitality for the NODCC
.
By Miriam Bernard
.
When it comes to building connection within the NODCC community, few people embody the spirit of hospitality and togetherness quite like New York resident Katherine Gee. As both an adult with ACC and the mother of a daughter with the same diagnosis, she’s seen firsthand the power of bringing families together through local gatherings. She’s recognized that many people enjoy NODCC meetings in their regions, but may be timid to take the step of organizing one. Katherine’s goal is to inspire others to connect their communities and gather together.
.
Katherine’s connection to the NODCC stretches back over two decades. “I’m one of the original DCCers, I guess I would call myself,” she shared with a laugh. “My whole family found out about the NODCC in the early days, after I was diagnosed with ‘Isolated Complete Agenesis of The Corpus Callosum’ at 19 years old.” After her diagnosis, Katherine’s mother began researching the disorder to learn more. “My mom was able to find Lynn Paul, and through her, we met Barb Fonseca,” she recalled.
.
Years later, Katherine’s daughter Lillian’s diagnosis rekindled her involvement in the organization. Lillian is now 12 years old. Katherine recalls, “My daughter being diagnosed was kind of a wake-up call that I couldn’t ignore the disorder anymore. We thought, maybe we need to start paying attention and see what updated information was available.’”
.
At a conference in Massachusetts, Katherine met Kim and Kip Oren, who had hosted their own NODCC gatherings in Texas. “They held a gathering that included lectures, and I actually participated in it as a guest lecturer remotely,” Katherine said. “Kim spoke to me about it and explained how worth it local meetings are, and she encouraged me to hold one of my own.” That conversation inspired Katherine to hold her own local NODCC event. “I did a small one that next summer at our local library,” she recalls. “It was all in one room, everybody did the same thing, and our library had a parent resource center above it, so my husband and my cousin went up there with all the kids to play. And that was the start of it all.”
.
Since then, Katherine has hosted gatherings every other year, planning them in the “off years” between national conferences. “We’re expanding every year with the lectures and info sessions we hold, and different activities for the different age groups,” Katherine shared.
.
Katherine’s efforts have in turn inspired others to organize events of their own. She shared, “There was another adult with DCC who had come to one of my Regional Meetings and liked how I ran it. She chatted with me and then ran one very similar in her hometown.”
Katherine’s connection to the NODCC stretches back over two decades. “I’m one of the original DCCers, I guess I would call myself,” she shared with a laugh. “My whole family found out about the NODCC in the early days, after I was diagnosed with ‘Isolated Complete Agenesis of The Corpus Callosum’ at 19 years old.” After her diagnosis, Katherine’s mother began researching the disorder to learn more. “My mom was able to find Lynn Paul, and through her, we met Barb Fonseca,” she recalled.
.
Years later, Katherine’s daughter Lillian’s diagnosis rekindled her involvement in the organization. Lillian is now 12 years old. Katherine recalls, “My daughter being diagnosed was kind of a wake-up call that I couldn’t ignore the disorder anymore. We thought, maybe we need to start paying attention and see what updated information was available.’”
.
At a conference in Massachusetts, Katherine met Kim and Kip Oren, who had hosted their own NODCC gatherings in Texas. “They held a gathering that included lectures, and I actually participated in it as a guest lecturer remotely,” Katherine said. “Kim spoke to me about it and explained how worth it local meetings are, and she encouraged me to hold one of my own.” That conversation inspired Katherine to hold her own local NODCC event. “I did a small one that next summer at our local library,” she recalls. “It was all in one room, everybody did the same thing, and our library had a parent resource center above it, so my husband and my cousin went up there with all the kids to play. And that was the start of it all.”
.
Since then, Katherine has hosted gatherings every other year, planning them in the “off years” between national conferences. “We’re expanding every year with the lectures and info sessions we hold, and different activities for the different age groups,” Katherine shared.
.
Katherine’s efforts have in turn inspired others to organize events of their own. She shared, “There was another adult with DCC who had come to one of my Regional Meetings and liked how I ran it. She chatted with me and then ran one very similar in her hometown.”
.
Has the local gatherings program reached its peak? Not even close! Katherine believes there’s still lots of room to grow. “I would say it has tons of room for improvement, not in the sense that people aren’t doing well at it, but in the sense that there’s so many more places that deserve local gatherings,” she said. “A lot of people are afraid to hold it themselves,” she admits.
.
Katherine encourages new organizers to start small, and decide whether they want to host a “gathering” or a “meeting”. A “gathering” would be more of an informal hangout such as a barbecue or picnic, perhaps with some games, where DCC families can simply bond and be together. Another option is a “meeting”, which is a bit more organized with sessions or lectures. Meetings can often be broken down into activities for different age groups and categories of individuals, similar to a mini-conference. If organizing a formal meeting, Katherine suggests selecting a theme, so that all info sessions point toward the same types of topics. This makes it easy to choose a new direction for the next one, and guarantees fresh information and sessions. Katherine admits, “I think a lot of people are intimidated, but that’s why we as the NODCC are trying to reach out more and make it known that we will help.”
.
Katherine’s motivation for local gatherings comes from seeing their impact. “It’s always about the attendees,” she states. “The parents and the adults were coming out of those sessions thrilled and coming up to me and saying, ‘Oh my gosh, I really enjoyed this speaker, I got a lot out of it, can we have this speaker at the national conference?’” Each event, she said, “is to help keep that spark alive while waiting for the next national NODCC conference to happen again.” She states, “It reminds us that we’re not alone, and that our community is strong, growing, and right there in your own backyard.”
.
Despite juggling a busy life, working as a teacher’s aide in a kindergarten classroom, raising two children, and recently moving homes, Katherine continues to prioritize her involvement with NODCC. “It’s busy, but it’s the best kind of busy,” she says. “Seeing the impact of these gatherings, the friendships that form, and the confidence people gain – it reminds me why I started.” She also credits the support of other board members, community leaders and her husband who attend and assist with her events. “We’re all in it together,” she says. “At my last gathering, four other board members came to help: introducing speakers, serving food, whatever was needed. That’s what this organization is all about.”
.
To make hosting easier, Katherine’s developed tools to help newcomers. She’s happy to provide them to anyone who is curious about hosting a gathering in their area. She shares, “If someone wants to hold one but doesn’t know where to begin, they can reach out to the NODCC. We would gladly help.”
.
As we work to expand the number of local gatherings nationwide, Katherine hopes her story will inspire others to take the leap. “Don’t overthink it,” she encourages. “Reach out, get advice, start small. The rewards are greater than the work.” 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 [email protected], or reach out to Katherine directly at [email protected] with any questions or interest. Let’s make the NODCC stronger together!
.
Katherine’s motivation for local gatherings comes from seeing their impact. “It’s always about the attendees,” she states. “The parents and the adults were coming out of those sessions thrilled and coming up to me and saying, ‘Oh my gosh, I really enjoyed this speaker, I got a lot out of it, can we have this speaker at the national conference?’” Each event, she said, “is to help keep that spark alive while waiting for the next national NODCC conference to happen again.” She states, “It reminds us that we’re not alone, and that our community is strong, growing, and right there in your own backyard.”
.
Despite juggling a busy life, working as a teacher’s aide in a kindergarten classroom, raising two children, and recently moving homes, Katherine continues to prioritize her involvement with NODCC. “It’s busy, but it’s the best kind of busy,” she says. “Seeing the impact of these gatherings, the friendships that form, and the confidence people gain – it reminds me why I started.” She also credits the support of other board members, community leaders and her husband who attend and assist with her events. “We’re all in it together,” she says. “At my last gathering, four other board members came to help: introducing speakers, serving food, whatever was needed. That’s what this organization is all about.”
.
To make hosting easier, Katherine’s developed tools to help newcomers. She’s happy to provide them to anyone who is curious about hosting a gathering in their area. She shares, “If someone wants to hold one but doesn’t know where to begin, they can reach out to the NODCC. We would gladly help.”
.
As we work to expand the number of local gatherings nationwide, Katherine hopes her story will inspire others to take the leap. “Don’t overthink it,” she encourages. “Reach out, get advice, start small. The rewards are greater than the work.” 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 [email protected], or reach out to Katherine directly at [email protected] with any questions or interest. Let’s make the NODCC stronger together!
