After attending a gathering in Minnesota with other families who had children with disorders of the corpus callosum (DCC), Lynn and Dana Snyder knew they had found their place.
“Allison was 6 at the time, remembered Lynn. “We came away knowing there were kids who had more challenges than Allison and a lot that were doing better. We felt like everybody got it – Allison got it too. We were hooked after Minnesota.”
That was 18 years ago, and after the first official year of operations of the NODCC, Lynn was asked to join the Board of Directors in 2003. That decision has led to him becoming one of the organization’s longest-serving Board members as Lynn completes his 13th year of Board service and wraps up his term as President in January. And that’s just Lynn. Add in Dana’s six years on the Board including her term as president, and the Snyder’s have dedicated countless hours and resources to serving the NODCC.
“There has almost always been a Snyder on the Board,” said Barbara Fonseca, managing director of the NODCC. “This family has a history of giving back. They helped with the conference in Indianapolis in 2009, met with local families and hosted a fundraiser concert with the Alley Cats.”
The continued motivation for service is their daughter. “We knew early on it was a volunteer organization that needed help,” recalled Dana. “For Allison and the way conference and the organization makes Allison feel, that’s our motivation. Allison got us on the Board and serving is a great experience.”
Adopted at birth, Allison showed signs that something was wrong within 24 hours, but nobody knew what it was. After a hydrocephalus diagnosis and shunt surgery when Allison was five months old, doctors mentioned Allison did not have her corpus callosum.
Lynn and Dana, who had already raised two girls who were now adult women, began their journey to learn about agenesis of the corpus callosum and how they could best help Allison. “In 1996 the internet search was very depressing,” said Lynn. “It was worst case scenario and very medical focused. The doctor told us he doubted Allison would walk and doubted she would talk. He said since she was adopted, we might want to consider an institution. We tried a lot of things to get us where we are today.”
Allison is now 24 years old and has completed high school. She stays at home with a caregiver who works with her on math, reading, puzzles and games as well as takes her on “field trips” to visit the apple orchard or to hippotherapy.
A retired engineer who now farms in Indiana, Lynn is proud to be able to contribute to and lead this organization as well as work with other volunteer members. “Experience with a DCC individual qualifies you to do anything with this organization,” added Lynn. “There is a place for everyone especially those who have a love for individuals living with a DCC.”
A huge thank you and much appreciation to Lynn and Dana for their service to the NODCC over the past 18 years. And special thanks to Lynn for extending his presidency term by one year and his past three years of leadership.
If you are interested in volunteering for service on a committee or with the Board of Directors, visit the Volunteer page under Get Involved on our website. A downloadable information sheet is available with more information and Board service requirements.