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: Susan Laupola
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 and now serves as the vice-president. She also 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 is 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 president of the CincySmiles Foundation and is on the nursing advisory board of Beckfield College in Florence, Ky.
She and her husband have two grown children, Max and Katie.
Secretary/Trustee: 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. Now, she’s a clinical trial consultant to Cincinnati Children’s Hospital. She serves as secretary of the NBIA board and has the thankless job of writing up the board’s minutes.
Tapke lives with her husband, Tom, and enjoys kayaking and cycling. They have a lakeside vacation home and dream of retiring there.
Treasurer/Trustee: Rick Tifone
Rick Tifone of Gibsonia, Pa., has served on the NBIA Disorders Association board since 2011 and is its 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 and his wife, Diane, have 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
Chair - Mark Karakourtis
Mark H. Karakourtis, a physician and dentist who practices oral and maxillofacial surgery in Austin, is chair of the NBIA Disorders Association board. He and his wife, Amy, found the organization after the oldest of their three children, Drew, was diagnosed at age 11 with PKAN, the most common form of NBIA.
Drew, now in his 20s, was the guest of honor at Band Together for a Cure in 2012 and 2016, events that celebrated his love of music and that raised money to advance NBIA research. Organized by the Karakourtis family and their friends, the events drew hundreds of people who showed their affection and support for the family.
Karakourtis has practiced in Austin since 2001 and is a member of the American Board of Oral and Maxillofacial Surgeons. He received a doctorate in dental surgery from the University of Texas Health Science Center at San Antonio in 1986, and a medical degree, with honors, from the University of North Carolina, Chapel Hill, in 1992.
He also serves on the boards of the Hospital at Westlake Medical Center and Carus Dental Group. Before coming to Texas, Karakourtis taught at the University of Nebraska and the University of Florida.
When he’s not working or calling the organization’s board to order each month,he can be found rock climbing in the Alps or yachting in Monte Carlo. “Not really,” he’s quick to add. Look for him instead at home, enjoying family time.
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.
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 became the board’s newest member in July 2016.
Meg, 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 Meg's inspiration to help steer the organization and help individuals and families affected by NBIA.
Meg has worked in the financial services industry for over a decade and now serves as a relationship manager for a large financial institution. In that role, she is responsible for fostering strong partnerships with retirement plan sponsors and their retirement committees. She has a bachelor’s degree in business management from the University of Phoenix and holds her Series 7 and 63 securities licenses from the Financial Industry Regulatory Authority.
In their spare time, Meg and Matt can often be found chasing Dylan around the Phoenix zoo, a splash pad or the Phoenix children's museum.
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.
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 idiopathic NBIA, which means the gene mutation that causes this form of the disease has not yet been identified. Sonja 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.
Melissa Woods, a self-proclaimed social media addict, has experience with a variety of social media platforms, including Facebook, Twitter, YouTube and Instagram.
Realizing how those skills could help the NBIA Disorders Association, board vice-president Sue Laupola asked Woods if she would consider volunteering with the organization. Woods agreed and became the association’s director of social media in 2012. She became a member of the board in the fall of 2014.
Woods works with Laupola and is a financial analyst for the Cancer and Blood Diseases Institute at Cincinnati Children's Hospital. She earned a bachelor's degree in accounting and Spanish from Transylvania University in Lexington, Ky., a well-regarded private college that the locals affectionately call Transy. She also has an MBA from Xavier University in Cincinnati.
In her spare time, she enjoys reading and hiking, as well as boating on Kentucky's Lake Cumberland.