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 biannual 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/Trustee: Mary Ann Roser
Mary Ann Roser of Austin was a journalist for more than 30 years when she decided in 2016 to take her skills and create a business, Roser Prose: Writing/editing/coaching.
She’s been working on the NBIA Disorders Association’s newsletter since its inception and has been on the board since 1998. Her cousin is Patricia Wood, the organization’s president, and who, despite Roser’s agility with words, regularly wins their Scrabble matches.
Before getting the entrepreneurial urge, Roser was the medical writer at the Austin American-Statesman for 16 years. She previously worked at the Fort Worth Star-Telegram and for newspapers in Kentucky, including a stint as a Washington correspondent for the Lexington Herald-Leader.
A native of Cincinnati, Roser is a graduate of the University of Cincinnati with a bachelor’s degree in English literature and minor hours in political science. She moved to Austin in 1993 where she met her husband, Ted Thomas. They are owned by three cats: Blanche, Stella and Stanley.
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, along with board member Sue Laupola, 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. He also puts on a terrific golf marathon fundraiser for NBIA.
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, the most common form 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 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.
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.
Pamela Craft of Cranberry Township, Penn., is a former health care worker who is now a stay-at-home mom of three kiddos, Zoe, Logan and Owen.
Craft stumbled upon the NBIA Disorders Association in 2014 while desperately searching for answers the night her then-4-year-old son Logan was diagnosed with INAD. She said learning her child has such a rare disease was terrifying and “can feel very isolating.” Craft and her husband, Robert, chose instead to connect with others.
They attended the association’s international family conference in 2015 as well as the 20th anniversary family weekend where they met “so many amazing families,” Craft says.
Before Logan's disease started to progress, she had worked as a respiratory therapist in the intensive-care unit and in the lung transplant center at the Cleveland Clinic. She also worked for two years as a site coordinator for an inhaled insulin drug trial.
In 2011, the family moved back to the Pittsburgh area to be closer to their families where Craft runs the house, is involved in a support group for moms of kids with special needs and volunteers in her children’s school libraries and classrooms. In her spare time, she enjoys reading, music and local theater.
Erin Davis, a Keller Fellow at Interact for Health, 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 The Ohio State University.
A Cincinnati resident, she enjoys running, traveling as much as possible, watching Ohio State football games and spending time with her husband, Eric, and their dog, Layla.
Amber Denton of Houston joined the NBIA Disorders Association Board of Trustees in October 2019 and quickly took on a leadership role: She will chair the board’s Development Committee, which aides in fundraising and bringing awareness to all NBIA disorders.
Denton has raised awareness about NBIA Disorders through the media and is a prolific and skilled fundraiser. She and her husband, David, have been hosting events in their Houston community to fight NBIA since their daughter, Sydney, was diagnosed with BPAN (Beta-Propeller Protein-Associated Neurodegeneration) in January of 2017. The Dentons founded Sydney’s Song, named after their daughter’s love of communicating in the only way she knows how: singing the tunes to her favorite songs. Sydney’s Song has worked with the BPAN Tribe of Houston on many successful fundraisers.
Amber Denton also self-published a children’s book, Sydney’s Song, dedicated to her daughter. She 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 earned a bachelor’s degree in Human Development and Family Studies from the University of Houston in 2007. She works as an elementary school teacher in Houston.
Denton and her husband also have a son, Brady, who is a wonderful big brother to Sydney. He’s a drum-playing middle schooler and American Ninja Warrior in training. Sydney is a happy-go-lucky little girl who is slowly changing the world with her love of music and beautiful smile.
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 and her husband can be found playing tennis, enjoying the Minneapolis lakes and chasing their two high-spirited, imaginative sons.
Meg Talley Dyer
Meg Talley Dyer, and her husband, Matt, joined the NBIA family in 2014 after a long and frustrating search to understand the challenges their daughter was facing. Dylan was 3 at the time and was severely developmentally delayed, showed many markers of autism and was suffering from seizures that could not be explained. When Dylan was diagnosed with Beta-propeller Protein-Associated Neurodegeneration, a form of NBIA known as BPAN, she was the youngest known child affected by the disorder. Meg's grief drove her to learn everything she could about NBIA and BPAN, which led her to the NBIA Disorders Association. She joined the board in July 2016.
Dyer, who lives with her family in Chandler, Ariz., says she is incredibly thankful for having found the association. She was comforted by acquiring new knowledge, making wonderful friends, and increasing hope for her daughter’s future. Dylan is her inspiration to help steer the organization and help individuals and families affected by NBIA.
Dyer has worked in the financial services industry for over 15 years and currently serves as a leader for a large financial institution where she is responsible for a multi-site contact center. She is currently pursuing her MBA from Drexel’s LeBow College of Business, has a bachelor’s degree in business management from the University of Phoenix, holds her Series 7, 24, 65, and 63 securities licenses from the Financial Industry Regulatory Authority (FINRA), and her Series 51 from the Municipal Securities Rulemaking Board (MSRB).
In their spare time, Meg and Matt can often be found chasing Dylan around the Phoenix zoo, a splash pad, or participating at a Special Olympics event.
Katie Kadamus and her family of Worcester, Mass., connected with the NBIA Disorders Association at the International Family Conference in May 2015. They came five months after Anna, the middle daughter of three girls born to Kadamus and her husband, Ben, was diagnosed with Beta-propeller Protein-Associated Neurodegeneration, or BPAN.
At the time, Anna was just 4, making her among the youngest children diagnosed with BPAN.
At the conference, the family learned more about Anna’s diagnosis and made wonderful new friends who quickly became like family. Through the work of the association and the medical team at Oregon Health and Science University, the family found renewed hope that there will be a treatment and cure for BPAN.
Kadamus joined the NBIA board in February 2017.
She earned a bachelor’s degree from Boston College and worked as a legislative analyst in the insurance industry for several years before becoming a full-time mother. She is involved in the parent teacher organization at her girls’ elementary school, serving as both the fundraising and book fair chairperson.
She and her husband can often be found cheering on their daughters Elizabeth and Olivia at dance recitals and competitions. The family also has a strong passion for Walt Disney World, and they are experts on enjoying the parks in Florida.
Sue Laupola joined Patricia Wood, (now NBIA Disorders Association President) in making a beeline for sunny San Diego in 1977. They were done with harsh Midwestern winters.
Laupola met her husband, Sam, in San Diego, but the couple returned to Cincinnati to be closer to family in 1986.
Laupola became a founding member of the NBIA Disorders Association’s board in 1996. She handles the organization’s fundraising registration requirements in all of the states that require charities to register and is on the finance committee.
She has over 30 years of experience in health care administration and recently retired from her position as the assistant vice president of finance and operations for the Cancer and Blood Diseases Institute at Cincinnati Children's Hospital Medical Center, one of the nation’s top children’s hospitals. In addition, Laupola is board secretary of the CincySmiles Foundation.
She and her husband have two grown children, Max and Katie.