Officers
President: Amber Denton
Amber Denton, recently appointed President of the NBIA Disorders Association, brings a wealth of experience and dedication to her leadership role. Previously serving on the Board of Trustees as Vice President and Chair of the Development Committee, Denton has played instrumental roles in advancing the organization's mission since 2019.
Denton actively promotes awareness of NBIA disorders and excels as a fundraiser. Together, the Dentons and local NBIA families have organized events in Houston to combat NBIA since their daughter Sydney's BPAN diagnosis in January 2017. Denton has led crucial fundraising and awareness campaigns, including Rare Disease Day, Million Dollar Bike Ride, and GivingTuesday, securing critical funds and shining a light on NBIA disorders. Additionally, she self-published "Sydney's Song," a children's book dedicated to her daughter, celebrating Sydney's unique form of communication- singing tunes to her favorite songs.
Denton earned a bachelor's degree in Human Development and Family Studies from the University of Houston in 2007. Before devoting herself entirely as President of the NBIA Disorders Association, Denton spent 16 years in elementary education, school leadership, and administration. In her free time, she enjoys spending time with her family, cooking, and cake decorating. The Dentons also have a son, Brady, a wonderful and compassionate big brother to Sydney.
Vice President: Meg Talley Dyer
Meg has been part of the NBIADA community since 2014 when her daughter Dylan was diagnosed with BPAN. In addition to her active role in the community, Meg served on the board from 2016-2021, and is returning to the NBIADA board of trustees as Vice President.
Meg’s professional career includes 20 years in the finance and investment services industry where she and brings experience in financial planning, relationship management, sales, and operational leadership. Beyond Meg’s official role at her firm, she also serves as a leader for their corporate-wide disability employee resource group where she advocates for disability accessibility and inclusion in the workplace.
Meg holds her FINRA series 7, 24, 63, 65, and MSRB 51 licenses and received her MBA from Drexel University. In her spare time, Meg and her husband Matt can often be found chasing Dylan around their neighborhood park or at a Special Olympics event.
Secretary: Matthew Ritzman
For Matt Ritzman and his family, the NBIA Disorders Association was the lifeline they needed after his daughter, Josie, was diagnosed with the PLAN variety of NBIA in February of 2013. The support, stories of hope and the connections to other families, medical professionals and researchers made their NBIA journey much more enjoyable, he says.
Ritzman, who lives in Oakland, Calif., joined the board of trustees in February, 2017.
He is a consultant in the computer-aided facilities management field, which uses software and other technology tools to help manage office space and buildings more efficiently. Ritzman said that in his job he helps “mid-to-large-sized companies find and keep track of all their stuff… like putting together classroom seating charts on a grand scale.”
He is an avid cyclist who said he’d rather be riding with Josie on their special bicycle built for two than doing “just about anything else in the world.” We assume that includes attending scintillating meetings of the NBIADA board.
Treasurer: Carolyn Banik
Carolyn Banik of Indianapolis, Indiana, joined the board in August 2022, six months after her daughter, Madison, 4, was diagnosed with BPAN. Banik had been seeking a support group of families when she found a sense of community with the NBIA Disorders Association. She immediately began networking and fundraising for the organization as Maddie B's Army. In her first year, she raised over $75,000 for BPAN research.
Banik and her husband have lived in various Midwestern cities and have an extensive network, enabling them to raise awareness about BPAN and the NBIA Disorders Association. She has taken her devastation from the diagnosis and turned it into eagerness to advocate for Maddie and others affected by this rare group of disorders. Banik enjoys Sunday dinners with extended family, who live in her neighborhood, walking and exploring with Maddie, organizing, refurbishing things and anything crafty.
Board of Trustees
Board Chair: Sarah Doerr
Sarah Doerr of Minneapolis, Minn., joined the NBIA family in 2018, when her older son Max, then 5, was diagnosed with PKAN, one of the most common NBIA disorders.
Doerr is a lawyer specializing in bankruptcy cases and is a shareholder in a Minneapolis law firm. After Max’s diagnosis, she and her family quickly mobilized to promote awareness of NBIA disorders and to raise funds for PKAN research.
Doerr served on the planning committee for the 2019 NBIA International Family Conference in Charleston, S.C., and joined the NBIA Disorders Association Board of Trustees in August 2019. She considers the NBIA community and individuals living with NBIA disorders to be a constant source of inspiration and intends to use her professional and personal advocacy skills to improve the lives of NBIA families. Doerr says she is hopeful effective treatments are on the horizon.
In her spare time, she can be found playing tennis, enjoying the Minneapolis lakes and chasing her two high-spirited, imaginative sons.
James A. Bourgeois
A retired Air Force Reserve colonel, Bourgeois earned his medical degree at the Uniformed Services University of the Health Sciences School of Medicine in Bethesda, Maryland. He completed a psychiatry residency at Wright State University in Dayton, Ohio. Over the years, he has held academic appointments at McMaster University (in Canada); University of California, Davis and San Francisco campuses; Uniformed Services University of the Health Sciences; University of Texas at San Antonio; Texas A&M University, and Baylor College of Medicine.
Bourgeois is married to Kathleen M. Ayers, a doctor of clinical psychology who works at University of California, Davis and for Better Help. The couple have two grown children, Emile, a mechanical engineer in Sacramento, and Germaine, or “Gigi,” who was diagnosed with MPAN, a form of NBIA, in 2017. Gigi worked for four years at Brookwood in Georgetown TX, a highly innovative vocational community for developmentally disabled adults, until the family’s return to California in 2022.
Jeff Gartman
Jeff Gartman joined the NBIA Disorders Association board in August 2022, about four years after his son Levi, then 6, was diagnosed with Classic PKAN. The family attended the organization’s international conference in 2019 where they met many others who understood their NBIA journey and helped them learn about wheelchairs, feeding support, medicines, treatments and more. Levi died in March 2022, two months shy of his tenth birthday. He was a very happy kid, an entertainer and a fighter. Gartman joined the board to give back to the community.
He works for the Mayo Clinic’s Center for Digital Health as director of Delivery Management and is responsible for web and mobile project delivery and governance. He loves seeing how digital tools can improve a person’s health care experience and previously held leadership positions in digital technology delivery and operations at Cigna and Evernorth.
Gartman is a native New Yorker who now lives in South Windsor, Connecticut, with his wife Danielle, daughter, Lilah (a carrier who is unaffected by PKAN) and goldendoodle, Simba. He holds a degree in Information Sciences and Technology from Penn State, and an MBA from the University of Connecticut. He enjoys traveling, running and spending time with family and friends.
Jennifer Sanchez
Jennifer Sanchez of Houston has served on the NBIA Disorders Association’s Development Committee since fall 2019, and two years later, she joined the organization’s board of trustees. Sanchez has worked energetically with the NBIA Disorders Association and Houston’s BPAN tribe on awareness campaigns and fundraising events to foster a sense of community and collaboration. She believes that when we share our experiences, we are better informed and empowered to navigate the rare disease terrain with greater confidence.
Her daughter, Sophia Madeleine, was diagnosed with BPAN in January 2017 after a 10-year odyssey. During that time, Sanchez learned to be an unapologetically persistent advocate for Sophia. Shortly after her daughter’s diagnosis, Sanchez attended the NBIA Disorders Association International Family Conference in Chicago where her spirits were renewed. She left the conference with a new mission: to work together to find a cure for all NBIA disorders.
Before she became Sophia’s full-time “concierge and chauffeur,” Sanchez worked for 16 years in mortgage operations management as a secondary markets manager. Today she lives with Sophia, her husband, Walter, and their four-legged fur-baby, Thor. In her spare time, Sanchez enjoys mystery novels, dancing, costume design and going for long walks and bike rides with Sophia.
Vanessa VanOost Smith
Vanessa Smith of Hendersonville, Tennessee, first heard about NBIA Disorders Association when her cousin, Madi Mumm, was diagnosed in 2016 with BPAN, now the most common of the NBIA disorders.
Smith graduated from Olivet Nazarene University in 2019 with a bachelor of science in biology. She has a passion for genetics, research and rare disease. She works in newborn screening, but has set her sights on becoming a genetic counselor.
Smith began volunteering with the NBIA Disorders Association in 2018. She attended the 2019 conference in Charleston as a volunteer in the care room. For the past year, she has been contributing articles for the newsletter and helping with an update of the organization’s website. She joined the NBIA Disorders Association Board of Trustees in September, 2021.
She and her husband, Tim, have a 6-month-old daughter, Rosie. In her spare time, she enjoys spending time with her family and taking their dog to the dog park.
Jennifer Wildvank
Jenny Wildvank, a member of the NBIA Disorders Association Development Committee and the organization’s social media director since 2020, joined the board of trustees in September, 2022. She also serves on the planning committee for the organization’s international family conference. Her daughter, Dahlia, was nearly 2 when she was diagnosed with BPAN in May 2019. Wildvank immediately began raising funds for the organization and attended her first family conference that same month.
A resident of Huntington Beach, California, Wildvank is an account manager in the tradeshow industry. She is driven to be an advocate and a voice for her daughter and other individuals with special needs. She and her husband, Branden, also are the parents of Dahlia’s brother, Teddy. Wildvank enjoys traveling, reading, writing and watching soccer, hockey and reality shows. She says she is doing her best to keep shopping malls alive.
