Patricia Wood is founder and president of the NBIA Disorders Association. She’s also living proof that nothing motivates a parent like a sick child.
Her daughter, Kimberly, who has idiopathic NBIA, was just 10 when Wood, frustrated by a lack of help and resources for families affected by NBIA, started the organization in 1996. She was determined that no others be forced to take the journey alone.
After 16 years as a volunteer for the organization, Wood became a part-time employee in 2012. She remains an officer in the organization but is no longer a voting board member.
As president, Wood is responsible for the day-to-day running of the organization, research grant administration, family support, organizing biennial family conferences and serving as the liaison to other non-profit organizations, corporations, research institutions and medical professionals.
She and Kimberly live in San Diego where they share a love of watching 3D movies. Wood also enjoys walking on the beach in nearby Coronado, one of their favorite spots, as well as biking, hiking and playing in the sun.
Our Volunteer Directors work tirelessly to help advance the organization’s goals.
Social Media Director
Erin Davis, marketing and communications associate in the Cancer and Blood Diseases Institute at Cincinnati Children's Hospital, took a seat on the NBIA Disorders Association board in October 2017. She will serve a three-year term, with options to renew her service.
As a lover of all things social media, Davis also has volunteered to serve as the association’s social media director. In this role, she manages the Twitter, Facebook and YouTube accounts.
Davis has a master’s degree in public administration and bachelor’s degrees in Strategic Communications and Women's Studies from Ohio State University in Columbus.
A Cincinnati resident, she enjoys traveling as much as possible, watching Ohio State football games and spending time with her husband and their two dogs.
Director of Adult Programs
Our Director of Adult Programs who is an adult with NBIA, acts as a mentor and leader for other adult NBIA individuals. He plans special activities at our family conferences to engage the adults and works to promote NBIA awareness with various volunteer activities.
Director of Planned Giving
Megan Thomas of Princeton, N.J., wears many hats. She’s a lawyer, an Episcopal priest and a recent newlywed -- to Tom Bodenberg. But the role Thomas lists first is that of mother, to Sonja Olson.
Sonja has PLAN and is the youngest of Thomas’ four children from her first marriage. She was born in 1995 and was diagnosed with NBIA at age 12 when she began to have difficulty walking and maintaining her balance.
Sonja, who now uses a wheelchair, is a "super senior" in her special day school and wants to become an artist and therapy dog handler after graduation.
Thomas, who is the pastor of an Episcopal congregation in Ewing, N.J., said she strives to make the worship service and church activities welcoming and accessible to people with all kinds of abilities.
At the law firm of Stevens & Lee PC in Lawrenceville, N.J., where Thomas holds the title of counsel, she specializes in estate planning and estate administration, including planning for artists, art collectors and parents of children with special needs. She also focuses on charitable gift planning and the formation of philanthropic trusts and foundations. She offers guidance to NBIA families interested in including the organization in their estate planning.
Thomas has an undergraduate degree from Dartmouth, a law degree from the University of Pennsylvania and a master’s of divinity degree from the General Theological Seminary in Manhattan.
Our organization could not run without the help of all of our other volunteers who aid our cause. From clerical help, advocacy efforts, family conference planning, to family fundraisers for NBIA research, our NBIA families and friends are vital to our success.