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Celebrating 20 Years of the NODCC – 2003-2023
“Reflections from our Members”
Community Voices Share What the NODCC Means to Them
Compiled by Miriam Bernard
If you read our monthly newsletters, you may have come across one of the previous articles this year from our anniversary series “Celebrating 20 Years of the NODCC – 2003-2023”. We hope you’ve enjoyed hearing from important individuals who have helped make this organization what it is. This is the final installment of the anniversary series, and we feel we’ve saved the most important voices for last: those from our NODCC community. Today, we bring you notes on what the NODCC has meant over the years to several individuals with DCCs and their family members. We hope as you enter the week of Thanksgiving and read what this community means to them, that you are brought into a grateful state-of-mind, just as we are.
Reflections from Heidi W., community member since 2020:
“While doing research about my congenital brain condition in 2020, I stumbled upon this website; and it gave me LOTS of helpful information. Now I do Facebook fundraisers every year for my birthday. This website has helped me realize that so many other people deal with the same condition I do, or others close in relation. I’m grateful for their beneficial information, and insight to related conditions.”
Reflections from Kristen B., community member since 2001:
“My son has C-ACC, my daughter has been part of the siblings group, and I have done various workshops at conferences over the 20 years. Our 1st conference was in 2001, before NODCC officially was formed. We have attended every conference since 2001. I was on the Board of Directors for 6 years during which time I added educational information to the NODCC website and have led various workshops at the conferences. The information from the experts in the field of DCC has been the best, most helpful information because they really understand the disorder. The conferences have all been phenomenal and the relationships made through NODCC have been amazing. The NODCC families have been our extended family for the past 20 years. I’m grateful for family, friends, friends who have become family, health and the blessings of continued connection with people who "get it".”
Reflections from Felicia C., community member since 2015:
“The NODCC community is absolutely incredible. Finding out about this disorder can be really intimidating, but when we found the NODCC and all the amazing families living such incredible lives, we knew we were in good hands. I’m so grateful for the DCC community that so openly accepts all who come into it!”
Reflections from Jackie H., community member since 2011:
“The NODCC has given me the ability to help others with my experience, as well as hearing the experiences of others.”
Reflections from Tami B., community member since 2007:
“I’m a NODCC Region 9 member and participant, and a local adult contact representative for new members. The NODCC has enriched my life because knowledge is power. I’ve had an introduction to mindfulness training for self-empowerment, and I’m so grateful for the positive self-empowerment I’ve attained through the collective knowledge, wisdom, and relationships of the NODCC community over the years.”
Reflections from Jodi J., community member since 2010:
“The NODCC has given us strong advocacy for our son’s educational support. Because of the NODCC, we have become much more understanding to kids who learn differently and have become more patient in the learning process. My daughter changed her career course from teaching science to supporting kids with learning disabilities after seeing her little brother struggle. My son with CACC left public school and attends a school for kids who learn differently. Eli is with people who get him.”
Reflections from Susan C., community member since 2017:
“I have a child with complete ACC and was introduced to the NODCC in 2017. I follow the group on social media, read the happenings, and ponder if one day I'll get to participate in the events. The NODCC has given me a place to fit in, and to gather information. If I have curiosity about something my child is experiencing, I go to NODCC for answers first. I'm thankful for the sense of community the NODCC provides.”
Reflections from Amanda S., community member since 2015:
“This program has helped me cope with my son’s diagnosis at first and has continued to give insightful knowledge that not even his doctors could give me at the time. I’m very grateful for my family, and their health!”
Reflections from Rob, Betsy, and Caroline N., community members since 2004:
“We’ve attended conferences and participated in the research with Dr. Elliott Scherr. The NODCC has provided us with awareness and education of this disorder as well as meeting other families with this disorder. We are grateful for our loving, social and beautiful daughter, Caroline, who has taught us so much about the importance of family.”
Reflections from Kelli W., community member since 2018:
“My two children have ACC. My 6 year old daughter has partial ACC and my 3 year old son has complete ACC. I readthe newsletter and follow the “Living with DCC” Instagram account. The NODCC has enriched my life through hearing personal testimonies from other families and success stories, finding out about resources that are available and the yearly conference that we can participate in. I’m incredibly grateful for the free resources and information to help families.”
Reflections from Abigail K., community member since 2022:
“I am an adult living with Complete ACC. I follow the NODCC on Instagram, and I like reading about other people with ACC to learn more about it. I’m grateful that there is an organization that understands my condition.”
Reflections from Ilana D., community member since 2018:
“I am an ACC Adult and current NODCC board member. My parents had known about my condition since before I was born in 1993. This organization has enriched my life because it’s helped me learn how to advocate for myself and others. I’m thankful for the connections I’ve made and the insight I’ve gained.”
Reflections from Sarah M., community member since 2003:
“I am a longtime NODCC participant who has CACC. I participate in research studies, I attend the conferences, I participate in zoom calls, and I am on the Communications Committee. This community has helped me meet other adults with a DCC, and also connect with other families. I have friendships that I have had now for the last 20+ years. I am grateful for the community, the support, and the understanding as well as the eagerness of learning more about DCC.“
As we head into our most gratitude-focused time of year, we hope you’ll take time to reflect on what the NODCC has meant to you thus far, and also how you hope it grows in our next 20 wonderful years! Thank you for your readership, participation, and involvement in this family, and a huge thank you to everyone who submitted stories of what the NODCC means to them! We are who we are because of each of YOU.
To read the previous installments of our anniversary series, click HERE.
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