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.
From a food bank to a classroom program that fosters learning by doing, Colleen Lukoff’s heart is clearly in the nonprofit world. The veteran fundraiser and San Diego area resident became the development director for the NBIA Disorders Association in March 2017 and will oversee all of the organization’s fundraising efforts.
If you’re an NBIA family member, friend or just someone who wants to help raise money for research or donate to the organization, Lukoff is your gal. She has been involved in fund development since 1985 as a staff member, consultant and volunteer. She has helped raise millions for a variety of San Jose nonprofits and teaches fund development through the UC San Diego Extension program.
Lukoff was honored as the Outstanding Professional Fundraiser by the Association of Fundraising Professionals Silicon Valley Chapter and has been a Certified Fund Raising Executive credential holder since 1993. She will work part-time for the NBIA Disorders Association.
A fourth-generation Californian, Lukoff enjoys learning about her family’s history, knitting and spending time with her husband, Allan, and their poodle, as well as her children and grandchildren.
You can reach Lukoff via email at CLukoff@NBIAdisorders.org, or by phone at 760-402-5686.
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.