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
Melissa Woods (socialmedia@NBIAdisorders.org)
Our Social Media Director handles our Facebook, Twitter and YouTube accounts, ensuring that they are up-to-date and useful to the NBIA community.
Melissa Woods, a self-proclaimed social media addict, has experience with a variety of social media platforms, including Facebook, Twitter, YouTube and Instagram.
Realizing how those skills could help the NBIA Disorders Association, board vice-president Sue Laupola asked Woods if she would consider volunteering with the organization. Woods agreed and became the association’s director of social media in 2012. She became a member of the board in the fall of 2014.
Woods works with Laupola and is a financial analyst for the Cancer and Blood Diseases Institute at Cincinnati Children's Hospital. She earned a bachelor's degree in accounting and Spanish from Transylvania University in Lexington, Ky., a well-regarded private college that the locals affectionately call Transy. She also has an MBA from Xavier University in Cincinnati.
In her spare time, she enjoys reading and hiking, as well as boating on Kentucky's Lake Cumberland.
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 idiopathic NBIA, which means the gene mutation that causes this form of the disease has not yet been identified. Sonja 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.