President: Patricia V. Wood
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.
Vice President: Amber Denton
Amber Denton of Houston joined the NBIA Disorders Association Board of Trustees in October 2019 and quickly took on a leadership role as chair of the board’s Development Committee, which aides in fundraising and bringing awareness to all NBIA disorders. In February 2022 she was elected Vice President and will fulfill this role in addition to leading our Development Committee.
Denton is committed to helping the NBIA Disorders Association achieve its goals and says she found the organization to be the soft-landing place she and her family so desperately needed after Sydney’s devastating diagnosis.
Denton has raised awareness about NBIA disorders through the media and is a prolific and skilled fundraiser. She and her husband, David, along with local NBIA families, have been hosting events in their Houston community to fight NBIA since their daughter, Sydney, was diagnosed with Beta-Propeller Protein-Associated Neurodegeneration (BPAN) in January of 2017. Denton also leads major fundraising and awareness campaigns throughout the year such as Rare Disease Day, Million Dollar Bike Ride, and GivingTuesday. These campaigns bring critically needed funds to the organization and raise awareness for all NBIA disorders. Denton also self-published a children’s book, Sydney’s Song, with all proceeds going to NBIA Disorders Association. She dedicated the book to her daughter, celebrating her love of communicating in the only way she knows how: singing the tunes to her favorite songs.
Denton earned a bachelor’s degree in Human Development and Family Studies from the University of Houston in 2007. She currently works as a Primary Instructional Specialist and coaches teachers at an elementary school in Houston. In her free time, she enjoys spending time with her family, cooking, and cake decorating.
The Denton’s also have a son, Brady, who is a wonderful big brother to Sydney. He is a school-loving percussionist who will soon join the marching band. Sydney is a happy-go-lucky little girl who is slowly changing the world with her love of music and beautiful smile.
Secretary: Mary Tapke
Mary Tapke of Cincinnati came to the NBIA board through her friendship with Patricia Wood, the group’s founder and longtime president. Tapke and Wood were neighbors growing up, so when Wood asked Tapke for help with the NBIA Disorders Association, Tapke gave Wood the only answers she could: She was in.
Tapke has deep expertise in clinical trials and research. She has a master’s of business administration from Xavier University in Cincinnati. She also is a board-certified clinical research professional, a radiologic technologist, with an undergraduate degree from Xavier, and a radiation therapy technologist, with training from the University of Cincinnati.
She has a background in managing global clinical trials in oncology, women’s health, arthritis and gastrointestinal diseases.
Tapke worked at Procter and Gamble for over seven years, and after that, she was a research contractor for several pharmaceutical companies. She is now retired and stepped down from the board in 2017, but continues to serve as secretary and an officer of the organization, and has the thankless job of writing up the board’s minutes.
Tapke lives with her husband, Tom, and enjoys kayaking and cycling at their lakeside vacation home.
Treasurer: Rick Tifone
Rick Tifone of Gibsonia, Pa., served on the NBIA Disorders Association board from 2011 until 2018. His current role is treasurer. He also leads the board’s strategic planning process and makes sure the board members stay on track with their commitments to complete tasks outlined in the plan.
Tifone also reviews the organization’s financial statements and is known for his diligence in tracking spending and progress on research goals.
Tifone owns two small businesses, ClearCourse Consulting, which does management consulting, and CCC Holdings, which provides lending for real estate investors.
He has two adult children, Adam and Lauren. Adam was diagnosed with PKAN when he was a teenager in 2007.
Tifone earned an MBA from the University of Pittsburgh's Katz School of Business. He enjoys golfing, fishing and gardening.
Board of Trustees
Board Chair: 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.
Veronica Bonfiglio, a native of Argentina now living in Fremont, Calif., saw her life take a dramatic turn in 2003 when her 10-year-old son, Brent, was diagnosed with PKAN, one of the most common forms of NBIA.
Brent had seemed perfectly healthy but suddenly began to experience frequent falls. Within months, the family received the devastating diagnosis. The most difficult part wasn’t the diagnosis itself, Bonfiglio says, but the fact that it was a “rare” disorder with no treatment, no cure, and no prospects on the horizon.
Her son’s neurologist referred the family to the NBIA Disorders Association and soon she was volunteering with the organization. That gave her strength and hope, she says.
“I started with organizing fundraisers, creating graphics, managing the Family Network List,” she says. “Later on, I was writing articles for the newsletter, becoming a liaison to Spanish- and Portuguese-speaking families and eventually joining the board in 2008.”
The family’s story attracted the attention of Dr. Elliott Vichinsky at UCSF Benioff Children's Hospital - Oakland, and he began seeing Brent as a patient. Vichinsky headed up the U.S. part of a European-based clinical trial into deferiprone for PKAN individuals. Brent has received the drug, and Bonfiglio believes it has helped.
She has a bachelor of fine arts degree in graphic design from Cal State, Fullerton. She also has a certificate from San Francisco State University that she uses in her works as a certified Spanish court interpreter for the Superior Court of California, County of Alameda. She and her husband, Gaetano, have another son, Julian, a chocolate lab and a black cat.
James A. Bourgeois
Dr. James A. Bourgeois lives just north of Austin in Georgetown, which calls itself home to the “most beautiful town square in Texas.” He chairs the Department of Psychiatry at Baylor Scott & White Health’s Central Texas Division. He also is a clinical professor of psychiatry with the health system’s affiliated school, Texas A&M University’s Health Science Center College of Medicine.
A retired Air Force Reserve colonel, Bourgeois earned his medical degree at the federal government’s Uniformed Services University 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); the University of California, Davis; Uniformed Services University of the Health Sciences; University of Texas at San Antonio; and University of California, San Francisco.
Bourgeois is married to Kathleen M. Ayers, a doctor of clinical psychology and a faculty member and administrator for The Professional School of Psychology in Sacramento, California. The couple have two grown children, Emile, a mechanical engineer in Seattle, and Germaine, or “Gigi,” who was diagnosed with MPAN, a form of NBIA, in 2017. Gigi works at Brookwood in Georgetown, a highly innovative vocational community for developmentally disabled adults. Bourgeois says that Gigi’s job opportunity sealed the deal for the family’s move from California to Texas.
Kimberly Burke of Laverock, Penn., is Vice-President, Deputy General Councel of NovoCure, a global oncology company. Kimberly is an experienced corporate and securities law attorney who has spent over 20 years advising companies, with a focus on the life sciences industry. Before joining NovoCure, she was General Counsel and Chief Compliance Officer of Echo Therapeutics Inc., a research and development-stage medical device company. She served as Echo's interim CEO in 2014.
Burke is a 1999 graduate of the College of William and Mary Law School and joined our board of trustees in April 2017. In a short time, her fellow trustees have come to rely on her legal expertise and practical wisdom.
Burke and her husband, Doug, have a daughter, Audrey, with BPAN. Audrey’s twin sister, Betty, is not affected by the disorder. The family has been active in raising money for BPAN research and raising awareness about NBIA disorders. In her free time, Kimberly enjoys music, reading and photography.
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.
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.