Passing the Torch: Wood to step down as our organization's president September 30th
By Sarah Doerr
Board of Trustees Chair
Twenty-seven years after she founded the NBIA Disorders Association, leading it with unwavering dedication, compassion and inspiration that seeded nine sister organizations around the world, our president, Patricia Wood, is stepping down September 30th.
Wood will stay on for two years in a part-time role to mentor her successor, BPAN parent and board member, Amber Denton of Houston. She will also direct our organization’s research program. Her leadership nurtured a strong and stable organization marked by a long list of accomplishments. They include:
Establishing the biennial NBIA Disorders Association’s International Family Conference. Since Wood organized the first gathering in 2000, our community has come together every other year to reconnect, learn from one another and the experts, and celebrate the lives of our loved ones affected by NBIA disorders
Expanding an international community of NBIA researchers, including committee planning for eight scientific symposia that continue cultivating the world’s best minds to study NBIA. The symposia bring together experienced and early-career researchers to share and build upon one another’s work
Continuous fundraising to support NBIA research, resulting in the publication of scientific articles and the discovery of genes associated with certain NBIA disorders
Leading a memorable $250,000 campaign in 2009 to keep the lab of our premier researcher, Dr. Susan Hayflick, afloat when federal funding dried up
Being a world leader in NBIA and helping to create the NBIA Alliance. The alliance is the umbrella organization with our organization as fiscal sponsor of NBIA patient organizations in 10 countries that collaborate to support NBIA-affected families and educate the public, along with funding and promoting the advancement of potential treatments
Serving as a critical partner in the $7.8 million international grant known as TIRCON, for Treat Iron-Related Childhood-Onset Neurodegeneration. The TIRCON International Patient Registry was created, and the grant supported a PKAN clinical trial for deferiprone
As impressive as each of these achievements is, the community Wood has built among NBIA families is her most significant contribution. When a family receives an NBIA diagnosis for a loved one and finds the NBIA Disorders Association, Wood is their first point of contact in our growing community. She offers support, information, connections and most importantly, hope, to hundreds of families. Wood says that a key reason she founded the NBIA Disorders Association was because of the loneliness and despair her family experienced when her daughter, Kimberly, was diagnosed with NBIA. She didn’t want other families to walk that rocky path alone.
“One of my goals from the start was to build a strong community so that we can emotionally support and learn from each other and find happiness and friendship as part of our journey in searching for treatments and cures for all our NBIA individuals,” she says.
Patricia Wood announcing at the conference that she is stepping down as president on September 30. She welcomed Amber Denton to the stage as the next president, who then shared her vision for the future.
You can listen to both speeches here.
Wood announced in Houston at the biennial family conference in May that she would be stepping down. She received a standing ovation after speaking about the gratitude and honor she has felt while helping to shape the organization’s past, present and future. She has worked closely with her successor for the past four years and says she enthusiastically supports the board of trustees’ choice of Denton.
Denton has been a board member since 2019 and currently serves as vice president. She also chairs the organization’s Development Committee, the lead role in fundraising. She has been an active member of our community since her daughter Sydney’s BPAN diagnosis in 2017. Board members are confident in Denton’s leadership skills, empathy, and drive to lead our organization into its next chapter.
“It is with immense pride and dedication that I assume the role of president,” Denton says. “I am deeply honored to follow in the footsteps of Patricia Wood and continue the impactful work that she has done for our community.
With a profound commitment to advancing research, providing support to our families and raising awareness, I am eager to collaborate with all of you to drive positive change for those affected by NBIA disorders. My vision is to build upon the foundation of the past 27 years, ensuring that every individual and family touched by NBIA disorders finds solace, resources and hope within our community.”
For those of us who weren’t at that first family conference in 2000, it’s hard to imagine a time when there wasn’t an NBIA Disorders Association to provide community and connection in our corner of the rare disease world. We are thrilled to have Denton continue in the spirit of our outgoing leader. I speak for the board when I say, “Patty, your vision and passion will continue to inspire us for many years to come.”