October 2020
Board chair pays tribute to two departing NBIA trustees
With gratitude and sadness, we say farewell to two board members who have contributed significantly to our association: Sue Laupola and Erin Davis, both of Cincinnati.
Erin Davis from Cincinnati, Ohio, leaves
the board at the end of her three-year term.
She also served as social media director
while on the board. |
Susan Laupola from Cincinnati, Ohio, leaves the board after 24 years as a founding member. She will continue to handle state registrations and serve on the 2021 virtual family conference committee. |
Sue and Erin, who recently completed their terms, worked for years in hospital administration and brought that expertise to the board. In addition, they have been trusted advisers and friends, whose work and wise counsel benefitted the entire NBIA community, including the board and parents like myself.
Most of us thrown into the NBIA world of doctor's appointments and advocacy for our family members discover a scary and disorienting world. As caregivers, we are suddenly obligated to learn about not just our individual diseases, but also how to navigate a byzantine health care system. It is extremely daunting and would be impossible without the help of experts who know how to develop relationships with clinicians and researchers, who know how grants are allocated and who know how health care institutions run. That’s why we've been incredibly fortunate to have Erin and Sue on our board of trustees.
Erin's contributions have been very visible over the last three years, as she's served both on the board and as our social media director. She produced the lion's share of notifications you've received on Facebook and Twitter. She has communicated clearly, consistently and concisely.
You may not have realized how vast Sue's involvement has been. She has been on the board since the NBIA Disorders Association was born 24 years ago. As a founding member of the organization, she's been fundamental to the creation, growth and trajectory of this organization. Sue isn't one to occupy the limelight. Instead her efforts are often unseen, in the background, keeping the ship on course as a member of the finance committee, doing the paperwork to assure we can raise money in every state, and chairing the committee that put on the family conference in 2019. She also did stints as the organization’s vice president. Sue is a wonderful leader.
Many thanks to Sue and Erin for making the board better and for being such delightful colleagues. They leave some awfully big shoes to fill.
 |
| Jennifer Wildvank from Huntington Beach, California, is our new social media director. She has a daughter, Dahlia, who is 3 and has BPAN. |
Fortunately, we are able to welcome a new volunteer to serve as our social media director, Jennifer Wildvank of Huntington Beach, California. Jennifer, mother of Dahlia, one of our BPAN girls, has a background in marketing and management, and has volunteered to join us in increasing awareness of the NBIA Disorders Association through the use of social media platforms.
Jennifer, we are excited and look forward to working with you! Sue and Erin, we hope your next adventure is exciting and fun.
Matthew Ritzman
Chair, Board of Trustees
June 2020
Board of Trustees welcomes 2 members filling the shoes of 2 departing trustees
|
Stephanie Zhadkevich
of Phoenixville, Pennsylvania, joins board in February.
|
The NBIA Disorders Association recently added two trustees, while saying goodbye to two others, Katie Kadamus of Worcester, Massachusetts and Pamela Craft of Cranberry Township, Pennsylvania.
Stephanie Zhadkevich
Zhadkevich is the associate director of financial planning and analysis at Novocure, a global oncology company in Phoenixville. She was introduced to the association through friend and current board member, Kimberly Burke, and says she was immediately fascinated by the organization’s work. Her educational background is in the medical sciences, and she has a longstanding interest in learning about new therapies to treat neurological disorders.
Zhadkevich also brings to the board expertise in financial planning and analysis as well as investor relations. She says she is excited to connect with families, investigate emerging therapies and contribute to a motivated community that inspires her.
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Dr. James Bourgeois of Georgetown, Texas, joins board in March.
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James A. Bourgeois
Bourgeois, a psychiatrist and academic leader, is the father of Gigi, an outgoing young woman with MPAN. He is the head of psychiatry at Baylor Scott & White Health’s Central Texas Division, as well as serving as a clinical professor of psychiatry at Texas A&M University’s Health Science Center College of Medicine.
Aside from his background as a physician, he brings to the board extensive experience with the research process, including procuring research grants and doing research on illnesses of the central nervous system. As an advocate for rare disorders, he has given presentations to the National Fragile X Foundation (nfxf.org), an established rare disease organization. He says he looks forward to planning future meetings, collaborating with other organizations, and reaching out to federal and state agencies that might be interested in working with our organization.
Kadamus and Craft stepped down after completing their three-year terms and will be greatly missed, NBIA Disorders Association President Patricia Wood said.
“We are grateful to Katie and Pam for their diligent, dedicated and selfless work on the organization’s behalf,” Wood said. “At our last family conference in 2019, they did an amazing job of involving families in creating baskets of goodies for our silent auction. They helped make the conference a big success.”
After 27 years as President of the NBIA Disorders Association, Patricia will now serve as our Research Program Director.
