FARA Leadership
Board of Directors
Ronald J. Bartek, President/ Director/ Co-Founder
Retired U.S. Government Official; Business Consultant
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Mr. Ronald Bartek is
the Co-founder and President of the Friedreich's Ataxia Research Alliance
(FARA); 4-year member, NIH National Advisory Neurological Disorders
and Stroke Council; and former partner and president of a business and
technology development, consulting, and government affairs firm.
Mr. Bartek’s profession experience also includes twenty years of federal
executive branch and legislative branch service in defense, foreign
policy and intelligence: including six years on the Policy Staff of
the House Armed Services Committee; four years at the State Department's
Bureau of Politico-Military Affairs, including a year as a negotiator
on the U.S. Delegation to the Intermediate-Range Nuclear Forces (INF)
Treaty talks in Geneva; six years as a CIA analyst of political-military
aspects of the East-West balance, including a year as an Intelligence
Community representative to the interagency groups charged with U.S.
arms control policy; former Director, American Friends of the Czech
Republic. Following graduation from the United States Military
Academy at West Point, Mr. Bartek spent four years as an Army officer,
serving as a company commander in Korea and an Infantry and Military
Intelligence officer in Vietnam. He has a Master’s Degree in
Russian Area Studies from Georgetown University.
Thomas A. DeCotiis, Chairman of the Board
Founder and Chief Executive Officer, CorVirtus
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Academician and experienced business
executive, Dr. Tom DeCotiis is a co-founder of CorVirtus, a company
formed in 1985 to provide high-level, specialized consulting distinguished
by values-based and vision-directed strategies. Over the course of two
decades, Dr. DeCotiis and his partner, Marta Erhard, have worked with
companies representing a wide range of industries including hospitality,
air and ground transportation, manufacturing, retail, construction,
and financial services.
Throughout his academic career, Dr. DeCotiis worked as a management
consultant, eventually building an international practice. He has worked
with industry leading companies including Corning Glass, IBM, Outback
Steakhouse, Inc., Hyatt Hotels, International, Westin Hotels, Inc, Wachovia
Insurance Services, Inc., Greyhound Bus Lines, Blockbuster Video, Inland
Homebuilding Group, Inc., Royal Caribbean, Inc., Darden Restaurants,
Inc., United Way, Goodwill Industries, and Take Stock in Children, Inc.
Dr. DeCotiis received his Ph.D. in industrial and organizational psychology
from the University of Wisconsin, Madison in 1974. He joined the faculty
of Cornell University before moving to the University of South Carolina,
College of Business in 1980 to join the team responsible for developing
a program incorporating behavioral sciences, quantitative methods, and
business strategy. He has published more than 80 articles, several book
chapters and a recent bestselling book titled Make It Glow: How to
Build a Company Reputation for Human Goodness, Flawless Execution, and
Being Best-in-class.
Tom and Marta make their home in Colorado Springs where they enjoy hiking
with their dogs, biking, gardening, and skiing.
Marilyn E. Downing, Secretary/ Director
Teacher/ Diagnostician, Special Education
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Mrs. Marilyn Downing taught special education
classes in Buffalo and southern California areas and was an Education
Evaluator for the Board of Cooperative Educational Services (BOCES).
She received her undergraduate degree in Exceptional Education from
St. Joseph College, West Hartford, CT and her Masters degree in Special
Education, SUNY College at Buffalo, and took post-graduate classes in
Movement Education at Wesleyan University, CT. Mrs. Downing has
two children, John born in 1984 and Bridget born in 1986. Bridget
was diagnosed with Friedreich's ataxia in 1996. Mrs. Downing began
fundraising for FA research with husband, Terry, in 1997 and was a founding
member of FARA in 1998. She left the position with BOCES in 2006
to volunteer for FARA as Secretary of the Board of Directors and as
Grassroots Fundraising chairperson.
Terrence M. Downing, Treasurer/ Director
Certified Financial Planner and Certified Public Accountant
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Mr. Terrence Downing built a financial
planning practice that now services 150 clients and has $75 million
of assets under management. Mr. Downing’s other professional experience
includes three years in management with Paychex- finishing as a regional
manager of five offices in southern California as well as five years
as a tax accountant for Price Waterhouse. Mr. Downing graduated
from Canisius College with an accounting degree. Mr. Downing
was one of the original founding members of FARA and has served as its
treasurer for the past ten years.
He is married to Marilyn Downing, current
secretary of FARA, and together they have two children. Son John is
currently living in North Carolina and daughter Bridget will graduate
Elon University in December 2008. Bridget was diagnosed with Friedreich’s
Ataxia in 1996 and has been the inspiration behind the Downing’s long
term commitment to FARA.
Paul Avery, Director
Chief Operating Officer, OSI Restaurant Partners, LLC
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Mr. Paul Avery is Chief Operating Officer
of OSI Restaurant Partners, LLC. Mr. Avery is a Founders Club member
of the Great Outdoors Conservancy, a Board Member of the Hillsborough
Education Foundation, Vice Chairman of Tampa Bay Watch and was President
of the American Beverage Institute for three years. Presently, he is
also an Honorary Trustee for Junior Achievement Enterprise Village of
Hillsborough County, a Vice President on MDA National Board of Directors, and
a Foundation Board Member of Kean University. Mr. Avery is also a Director
for the Friedreich's Ataxia Research Alliance.
John Cubbin, Director
Vice President, Electronic Data Systems (EDS)
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Mr. John Cubbin leads the EDS GM Global
Manufacturing & Quality business unit. With revenues of $320 million
and 2,400 employees in 21 countries, Mr. Cubbin is responsible for sales,
marketing, business development, operating income, service delivery
and client relationship management. Prior to this role, Mr. Cubbin
was the vice president and enterprise client executive for the Xerox
global account where he led a number of significant activities including
a five-year extension and expansion of the existing contract valued
at $1.5 billion (total contract value), a joint go-to-market strategic
alliance agreement and four consecutive years of a “blue” rating
on the Voice of the Client survey.
Mr. Cubbin began his career with EDS
in 1994 when he transitioned from Xerox Corporation. He progressed through
numerous leadership positions including manufacturing account manager
and global manufacturing division manager. Mr. Cubbin brings over
24 years of information technology and leadership expertise to EDS,
including engineering software development, data processing management,
business operations, account management, sales, executive relationship
management and new business development.
He attended Lawrence Institute of Technology
and Wayne State University. He also completed the Executive Development
Program at the London Business School. Mr. Cubbin serves as director
on the board of the Friedreich’s Ataxia Research Association. In his
spare time, he enjoys playing golf, coaching sports and reading.
Nicholas A. Johnson, Director
Associate & Senior Mechanical Engineer, Bard, Rao + Athanas Consulting Engineers, LLC
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An engineer with approximately 25 years of experience, Mr. Nicholas Johnson has
emerged as a leader in the field of facility engineering. He is a Senior
Mechanical Engineer. His credentials include Registered Professional Engineer,
Certified Energy Manager and LEED (Leadership in Energy and Environmental
Design). Mr. Johnson has served as president of the Boston Chapter of the
American Society of Heating, Refrigeration and Air Conditioning Engineers, and
he was Chairman of the Massachusetts State Energy Advisory Committee in 1996-2000.
At age 19, Mr. Johnson received a diagnosis of Friedreich’s ataxia, a disease of
the peripheral nerves that causes a progressive lack of coordination and muscle
weakness. Back as a young teenager, Mr. Johnson was a very good athlete in
several sports, but because of the degenerative effects of Friedreich’s Ataxia,
he now uses a power wheelchair for mobility. Mr. Johnson’s personal philosophy
of striving for continual growth and living each day with passion is reflected
in all aspects of his life. He has become a motivational speaker, and to shared
his enthusiastic attitude and determination with others.
Along with tireless fund-raising efforts for Friedreich’s Ataxia and
neuromuscular disease in general, Mr. Johnson speaks in behalf of FARA at a
variety of events and has appeared for 19 annual appearances on the Jerry Lewis
MDA Telethon. He currently serves on the MDA National Task Force on Public Awareness.
He’s also a mentor to several local young people who are affected by neuromuscular
diseases, and constantly strives to set a positive example for what can be
achieved despite living with physical challenges.
Mr. Johnson, 45, lives with his wife, Susan, in Waltham, Mass.
Laura Kalick, Director
Nonprofit Tax Director, BDO Seidman, LLP
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Mrs. Laura Kalick is the Director of
Nonprofit Tax at the BDO Seidman Institute for Nonprofit Excellence.
Mrs. Kalick is a tax attorney with 35 years of experience in both private
and government practice including the IRS National Office, the US Senate,
large accounting firms and practicing law. She is the co-chairperson
of the American Bar Association Unrelated Business Income Tax Subcommittee,
a member of the American Society of Association Executives Legal Section
Council, and a member of the District of Columbia Bar. Mrs. Kalick received
her BA from the University of Michigan, a JD from George Washington
University, and an LLM in Taxation from Georgetown University. She is
Co-author of the NACUBO Guide to IRS Audits (1994) and Hospital
Tax Management (1983). Mrs. Kalick is married and has three children.
Paul Marcotte, Director
Attorney & Communications Consultant
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Mr. Paul Marcotte is an attorney &
communications consultant. Mr. Marcotte has extensive experience
in media relations and writing and editing for various print, broadcast,
and online media. He developed legal affairs related broadcast
television programs for public television including series airing on
WNET in New York and WYCC in Chicago and provided media relations, marketing,
and speechwriting for American Bar Association and international law
firm Mayer, Brown. Mr. Marcotte’s previous experience includes
reporting for the Chicago suburban newspaper the Daily Herald,
writer and editor for the American Bar Association’s ABA Journal,
earning American and Chicago Business Press Editors awards. His
articles have also appeared in the Chicago Tribune as well as
other newspapers, magazines, and legal journals. Mr. Marcotte is also
a Director for the Friedreich's Ataxia Research Alliance.
Peter Pitts, Director
Senior Vice President, Global Health Affairs,Manning Selvage & Lee
Senior Fellow, Center for Medicine in the Public Interest
Former Associate Commissioner, US Food and Drug Administration
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- Board of Advisors, New York State Health Foundation
- Washington Drug Letter, Editorial Advisory Board
- Briefings on Drug Safety, Editorial Advisory Board
- Visiting Fellow, Center for the New Europe (Brussels)
- Advisory Board, Pharmaceutical Executive Magazine
- Editorial Advisory Board, The Patient Magazine
Mr. Peter Pitts is Senior Vice President, Director for Global Health Affairs for
Manning Selvage & Lee. From 2002-2004 Peter was FDA’s Associate Commissioner
for External Relations, serving as senior communications and policy adviser to
the Commissioner. He supervised FDA's Office of Public Affairs, Office of the
Ombudsman, Office of Special Health Issues, Office of Executive Secretariat, and
Advisory Committee Oversight and Management. He served on the agency’s obesity
working group and counterfeit drug taskforce and remains a Special Government
Employee (SGE) consultant to the FDA. He also serves as a senior fellow at the
Center for Medicine in the Public Interest, a think tank on public health care
policy issues
His comments and commentaries on health care policy issues regularly appear in
The New York Times,
The Los Angeles Times,
The Washington Post,
The Wall Street
Journal,
The Financial Times,
Health Affairs,
The Boston Globe,
The Washington
Times,
The Chicago Tribune,
The Chicago Sun Times,
The San Francisco Examiner,
Investor’s Business Daily,
The Baltimore Sun,
The Economist,
Nature
Biotechnology,
The Journal of Life Sciences the BBC World Service,
Fox News, and
The NewsHour with Jim Lehrer, among others.
His book,
Become Strategic or Die, is widely recognized as a cutting edge study
of how leadership, in order to be successful over the long term, must be
combined with strategic vision and ethical practice. He is the editor of
Coincidence or Crisis, a discussion of global prescription medicine
counterfeiting.
He has served as an adjunct professor at Indiana University’s School of Public
and Environmental Affairs and Butler University. A graduate of McGill
University, he is married to Jane Mogel, and has two sons.
Edward Ramsey, Director
Co-Owner and Vice President, Taylor Ramsey Corporation
Head of International Trade Division
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Mr. Edward Ramsey is currently the Vice
Pres and Sec. of Taylor-Ramsey Corp. – a producer and distributor
of forest products and Vice Pres. of BEPCO- a timber and land development
company. Mr. Ramsey graduated from Washington and Lee University.
Mr. Ramsey as well as one brother and one sister have FA.
Nancy Schneid, Director
Brand Consultant, OSI Restaurant Partners, LLC
Dr. Earl Giller, Scientific Director
Consultant, Global CNS Pharmacology Consulting, LLC
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Dr. Earl Giller received his MD, and
a PhD in Neurochemistry, at New York University School of Medicine,
and then did postdoctoral work on acetylcholine metabolism at NIH.
After an internship at the Hospital of the University of Pennsylvania,
he completed his psychiatry residency at Yale School of Medicine and
joined the faculty in the Department of Psychiatry. After 11 years
at Yale, Dr. Giller moved to the University of Connecticut School of
Medicine as tenured Professor of Psychiatry. Dr. Giller has received
grant support from the VA, NIMH and the pharmaceutical industry for
research in biological assessments (“biomarkers”) and pharmacological
treatment of schizophrenia, bipolar disorder, depression, anxiety disorders
and post-traumatic stress disorder. He is an author on over 80
peer-reviewed original articles, numerous abstracts, book chapters and
presentations, and edited two books on post-traumatic stress disorder.
He has reviewed grant proposals for the NIH and other funding agencies,
and served as a reviewer for multiple journals. He has extensive
clinical experience in both inpatient and outpatient settings in the
treatment of anxiety, mood and psychotic disorders, and substance dependence.
Joining Pfizer in 1992, Dr. Giller was a global clinical leader for
drugs in development for psychosis, depression and anxiety, most recently
a leader in the development of Pfizer’s antipsychotic ziprasidone
(Geodon) for schizophrenia and bipolar mania. He was also an early
proponent and leader of incorporating biological assessments into early
and late phase drug development programs for psychiatric disorders and
Alzheimer’s Disease. Dr. Giller was VP of Clinical Development
at Marinus Pharmaceuticals, Inc, January 2006 to May 2007, where he
completed a phase I study of a new formulation of ganaxolone, and initiated
a phase IIb global program with four studies (randomized, placebo-controlled
studies in infantile spasms and refractory adult complex partial seizures,
each with open-label extensions) after obtaining FDA endorsement.
Dr. Giller has been a Senior Scientific Advisor with MedAvante since
October, 2006, and is currently an independent consultant on CNS drug
development.
Dr. Bronya J. B. Keats, Scientific Director
Geneticist, Louisiana State University
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Dr. Bronya Keats is a Visiting Fellow
in the Research School of Biological Sciences at the Australian National
University. From 1999-2008 she was Professor and Chair of the
Department of Genetics, and the Director of the Molecular and Human
Genetics Center at Louisiana State University Health Sciences Center
in New Orleans. Dr. Keats received her Ph.D. in human genetics from
the Australian National University in 1976, and spent several postdoctoral
years at the University of Hawaii before accepting a faculty position
at Louisiana State University Health Sciences Center in 1982.
Dr. Keats' major research area is identifying and characterizing genes
that cause hearing loss and neurodegenerative disorders, and much of
her research has involved the participation of Acadian families in southwestern
Louisiana. In addition to this research, she has also provided community
outreach and education programs to enhance medical care in this underserved
population. Dr. Keats has served on numerous NIH Study Sections
and Working Groups; in particular, she was a member of the National
Deafness and other Communication Disorders Advisory Council from 1995-1999,
and a member of the NIH National Advisory Council for Human Genome Research
from 2000-2005. Additionally, she recently completed a two-year
term (2005-06) as President of the Association of Professors of Human
and Medical Genetics.
Advisors
Mary Beth Kozmicki, Communication Advisor
GM Global Marketing & Communications, Electronic Data Systems (EDS)
Mary Caruso, Development Advisor
Small Business Owner
William Harnett, IT & Development Advisor
Program Manager, Electronic Data Systems (EDS)
William Krutzer, Development Advisor
Louisiana State Commissions
Sandy Lane, Development Advisor
Small Business Owner
Samantha Litke, Development Advisor
Marianne Wilcox, IT Advisor
Enterprise Architect, Electronic Data Systems (EDS)