News from the NODCC

Board Member Spotlight: Tom Frey


Compiled by Miriam Bernard


This year, we're thrilled to introduce you to our NODCC board by sharing details directly from our board members, every other month. This month we are highlighting Tom Frey, friend of the NODCC since 2015. Tom hails from East Moriches, New York, and learned about the NODCC in 2015 after his daughter was diagnosed with a DCC. Tom’s wife searched the web for their daughter's condition and found the NODCC, but the family had just missed the 2014 conference in Boston. They then set their sights on getting to the next conference in 2016 in Chicago. The Frey family has been to every major and regional conference since that year and have become more deeply connected with each subsequent conference!


Tom has always had a desire to give back to those who have helped he and his family, which is what led him toward a desire to serve on the NODCC board. His favorite element of being on the board thus far is learning all the behind-the-scenes details that keep the organization running. One of his passions is the NODCC outreach program; in fact, one of his personal goals is seeing the outreach program soar in the coming years. 


When recalling cherished moments Tom shares, “I enjoy the camaraderie and getting to know everyone better when setting up for conferences.”  Tom wishes he could help everyone understand how in the NODCC, everyone grows very close and it’s easy to be accepted and be yourself. If you’re experiencing any trepidations about getting plugged in deeper to any NODCC committee or group, know that Tom and the whole board assure you: you won’t find a more accepting or friendly group anywhere. 


When Tom isn’t busy being an NODCC board member, he is the proud owner of a contracting business on the east end of Long Island. He also enjoys spending time with his family and friends, and volunteering at his local fire department. We are grateful to Tom and his family for their many rich contributions to our organization!

Celebrating Our Community’s Success: Jameson Gerrity’s Redemption Run


At the NODCC, we love sharing the incredible stories of resilience, determination, and success within our community. Every achievement—big or small—deserves to be celebrated, and we are always looking for opportunities to feature the amazing journeys of those who inspire us.


Today, we’re excited to share an article submitted by Kevin Gerrity, showcasing his son Jameson’s remarkable path in wrestling. Gerrity’s Redemption Run highlights Jameson’s dedication, challenges, and ultimate triumph on the mat. His story is a testament to perseverance and the power of never giving up. Read the full article on Legacy Wrestling HERE.


Have a story to share? We’d love to hear from you and celebrate your wins!

This event is open to families and individuals in Regions 1, 2, and 3, but everyone is welcome to join!


Come and meet other families, hear from adults with DCC, and sit in on professional lectures. Childcare will be available.


Click HERE to register.


Contact Katherine at livingwithacc@gmail.com with questions.

Are You a Parent of a Child or Adult with a DCC?


We'd like to hear from you! We're looking to share the experiences of parents with our community and your story might be just the one to inspire our readers! Please click the button below to fill out the short Google form with your story. We may use your words or even reach out for a full interview!

Click Here

Fundraisers & Donations


Show Your Support for the NODCC Through Annual Membership


The NODCC was founded to help those who are caring for someone with a disorder of the corpus callosum (DCC) or an individual living with a DCC by providing information, resources, and facilitating connections between members. Memberships help keep our operations and programs going – but most important, memberships ensure we can serve those living with a DCC in the future.


When you join or renew your dues for membership with the NODCC, you are investing in the future of the organization and ensuring we have the resources to help others for years to come.


Please consider becoming a member of the NODCC to pay it forward!


Click Here to Become a Member


Matching Gifts

​Don’t forget to check for matching funds from your employer. Many companies have matching gift programs that will equal or exceed employees’ charitable donation amounts.


Facebook Fundraisers

Fundraising for charities on Facebook is an easy way to help raise money for the NODCC. Simply click on the “Support Nonprofit” option when creating a new Facebook post and select the NODCC as the recipient. Birthdays, memorials, remembrances, and celebrations are great events to encourage giving from your family and friends.


Looking for other ways to support? The NODCC is searching for sponsors and partners who want to support our organization. We encourage all readers of the newsletter to send company names or potential company contact information to info@nodcc.org.


Donate to keep our community thriving!




Donate Here

See more volunteer opportunities

Contact Us

(714) 747-0063 I info@nodcc.org I nodcc.org

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