NBIA Disorders Association says adieu to two board members; elects new vp

The NBIA Disorders Association bid farewell to two of its nine board members this year and elected charter board member Susan Laupola of Cincinnati vice president.

The board thanks Gerry Barbiero of Niskayuna, New York, and Lisa Shook of Cincinnati, Ohio for their service. Gerry joined the board in 2004 and became vice president in 2005. He and his wife Bela were vital members of our organization and worked tirelessly to promote awareness of NBIA, raise money for research and generate support for the organization.

The couple had two girls with NBIA, Sabrina and Alyssa, who passed away in 2004 from the disease. Gerry and Bela will be missed.

Lisa joined the board in early 2006 and came up with the idea of a creating a cookbook to celebrate the organization’s 10th anniversary. The cookbook proved to be a major fundraising success.

Susan has handled numerous duties for the board since its inception, including its incorporation papers and tax filings in the various states. She was the board’s secretary for several years and has shown strong leadership throughout her service.

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The NBIA board has a new member: Matthew Hodgson, program director for the Institutional Review Board at the University of Cincinnati, a job he started in July. Hodgson joined the board in May and brings particular expertise to the association board in its research activities.
 
An institutional review board evaluates biomedical research involving humans, with an eye toward protecting the rights and welfare of those being studied.
 
Before joining the review board, Hodgson, 37, worked for Cincinnati Children's Hospital Medical Center as a medical writer in the Division of Hematology/Oncology.  At Cincinnati Children's he also coordinated non-therapeutic research studies and provided regulatory guidance for a portfolio of research studies on oncology and sickle cell anemia.
 
Hodgson grew up in a small northern Ohio town, Galion. He moved to Cincinnati in 1987 to attend the University of Cincinnati where he earned a bachelor's degree in English literature. He taught high school English for several years, then obtained a master's degree in education.
 
He and his partner, Tom, enjoy traveling and are involved in several neighborhood organizations, including the Northside Community Council and Citizens on Patrol.

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Lisa has a bachelor’s degree from Indiana University and is working on a master’s degree in health communication from IU.  She also received grantwriting certification from Northern Virginia Community College in 2005. She brings the board's membership to 9.
 
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They will replace Treasurer Gayle McMahon of El Cajon, Calif., Secretary Debbie Forstall of Los Angeles; and board member Dianne Gray of Naples, Fla. Each has completed five-year terms on the board. We are grateful for their service.

Board member Mary Tapke of Cincinnati has taken over the duties of secretary, and our new treasurer—and one of our new board members—is Jeff Doerner of San Diego.

Jeff is a retired pharmaceutical industry executive who has served on various other boards as president, vice president and treasurer. He works part time for a CPA firm doing accounting and tax return preparation.

Jeff has a bachelor’s degree in biology with an emphasis in biochemistry. He also has a master’s of business administration with an emphasis in operations management. He brings expertise to the board in medical science as well as business and accounting.

In his free time, Jeff enjoys reading, bicycling, researching his family genealogy and volunteering with charitable organizations.

A second new board member Gennaro “Gerry” Barbiero is the father of two girls with NBIA, Alyssa, 8, and Sabrina, 9, who passed away from the disease in March. Gerry and his wife, Anabela, spearheaded a fundraiser last August that netted $23,000 for our Research Fund, plus a $50,000 grant from the Wright Family Foundation for research equipment. The association used this grant to become founding members of the Genetic Alliance Bio Bank.

Gerry has worked since 1998 as a research chemist for Schenectady International, a family-owned chemical manufacturing company in upstate New York. He leads a group focused on developing new types of polymeric walls to meet commercial industrial needs.

Gerry received a bachelor’s degree in chemistry, a master’s in electrochemistry and a doctorate in organic and polymer chemistry.

Born in Montreal, Canada, to Italian immigrants, Gerry's major interests are skating, woodworking, gardening, biking, reading technical journals and books and spending time with his family.

Our third new board member is Phil West from Vancouver, Wash., which is just five minutes outside of Portland and near the Oregon Health & Science University, where research into NBIA is being conducted. Phil is the brother of board member Kris McGourthy and the uncle of two boys with NBIA.

Phil grew up in Mountain View, Calif., and received a bachelor’s degree in business from Oregon State. He has recently accepted a job working for Microsoft in sales.  Before that, he worked for Tripwire Software, selling security software to the government and he also worked for Hewlett Packard in Washington, DC.

Phil has experience as a secretary for an education non-profit. He is eager to lend his expertise to our group. He loves to play golf and snowboard in the winter. He also enjoys traveling.

The other board members, in addition to Tapke and Kris McGourthy of Middleboro, Mass., are President Patty Wood of El Cajon, Calif.; Susan Laupola of Cincinnati; and Mary Ann Roser of Austin, Texas.

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December 2004
 

2004 NORD conference provides great networking opportunities
By Jeffrey Doerner
 

For me, a first-timer, the best part about attending the annual conference of the National Organization for Rare Disorders (NORD) in October was the networking.

I had a chance to meet individually with scientists and physicians to discuss their work and how it might benefit our family members and friends with NBIA.

I was able to capture the interest of the head of a bone marrow transplant center, a chief scientist at a gene therapy center, the chair of the orphan drug department of a pharmacy school, and the liaison from a pharmaceutical company specializing in enzyme replacement therapy.

Having made these contacts, I will follow-up in the hope of trying to interest them in taking on NBIA as a research project.  At the very least, we will have raised awareness of the disorder.

The networking didn't stop with medical professionals, either. The encounters with leaders of other patient advocacy groups were pleasurable and invaluable. In a very short time, relationships were formed between people from around the world who face the same issues that we face.

 As a new NBIA board member and the treasurer, I learned how the different organizations approach and solve these issues. We all traded business cards and plan to stay in touch to support each other in our work.

The conference highlighted the extraordinary medical and social advancements made for people with rare disorders, and communicated the expectations, hopes, and plans for future advancements, as well as identifying issues of concern.

It also covered topics such as funding, legal issues, and partnering with industry. The legal issues workshop was extremely valuable to me because I deal with many of the financial issues that were discussed. These are important to us to maintain our tax-exempt, non-profit status.

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