FARA Leadership
AdvisorsDevelopment
Advisory BoardExecutive Staff
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 professional 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.
Edward Ramsey, Chairman of the Board
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.
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.
Ruth DeWitt, Treasurer
Accountant
Bill Alefantis, Director
Broken Plate Group, Founding Member
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Bill Alefantis is a Senior Director and founding member of the Broken Plate Restaurant Group located in
Calgary, Alberta, Canada.
Bill is also actively involved as a partner in a real estate development company, also located in Calgary. His background includes eight years as Director of Land Development with 7 Crowns Corporation, a company whose holdings include properties in both Canada and the U.S.A. Bill also served on the Planning Advisory Committee with the City of Calgary, in the development of an Area Structure Plan for annexed lands on the west side of Calgary.
Since his youth Bill has been an active member of the Order of AHEPA (American Hellenic Educational Progressive Association), a worldwide philanthropic organization. The mission of the AHEPA Family is to promote Hellenism, Education, Philanthropy, Civic Responsibility, Family and Individual Excellence. This organization has raised funds for many worthy causes, such as Cooley’s Anemia, Alberta Children’s Hospital and The Women’s Shelter of
Calgary, just to name a few. Bill also volunteered his time with the Hellenic Greek Orthodox Community of Calgary, serving for six years. During that time he was Treasurer for four years and Vice President for two years.
Bill’s youngest daughter Penelope was diagnosed with FA in her late teens. Her symptoms began to show at age 13, where running became difficult for her and took her away from the sports and dancing that she loved so much. The instances of FA are rare in Calgary and it took an agonizing one and a half years before the final diagnosis was made.
From that day, Bill had been actively searching out treatment options for his daughter. After many late nights on the internet, he came across the FARA website. He realized that fundraising was the one way that he could actively participate in helping find the cure for Penelope and those affected by this debilitating disorder.
Bill is also actively involved as a partner in a real estate development company, also located in Calgary. His background includes eight years as Director of Land Development with 7 Crowns Corporation, a company whose holdings include properties in both Canada and the U.S.A. Bill also served on the Planning Advisory Committee with the City of Calgary, in the development of an Area Structure Plan for annexed lands on the west side of Calgary.
Since his youth Bill has been an active member of the Order of AHEPA (American Hellenic Educational Progressive Association), a worldwide philanthropic organization. The mission of the AHEPA Family is to promote Hellenism, Education, Philanthropy, Civic Responsibility, Family and Individual Excellence. This organization has raised funds for many worthy causes, such as Cooley’s Anemia, Alberta Children’s Hospital and The Women’s Shelter of
Calgary, just to name a few. Bill also volunteered his time with the Hellenic Greek Orthodox Community of Calgary, serving for six years. During that time he was Treasurer for four years and Vice President for two years.
Bill’s youngest daughter Penelope was diagnosed with FA in her late teens. Her symptoms began to show at age 13, where running became difficult for her and took her away from the sports and dancing that she loved so much. The instances of FA are rare in Calgary and it took an agonizing one and a half years before the final diagnosis was made.
From that day, Bill had been actively searching out treatment options for his daughter. After many late nights on the internet, he came across the FARA website. He realized that fundraising was the one way that he could actively participate in helping find the cure for Penelope and those affected by this debilitating disorder.
Paul Avery, Director
Chief Operating Officer, OSI Restaurant Partners, LLC, retired
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Mr. Paul Avery recently retired as 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 and a Foundation Board Member of Kean University.
Peter Crisp, Director
Vice Chairman, Rockefeller Financial Services Inc, retired
General Partner, Venrock Associates, retired
Thomas A. DeCotiis, PhD, Director
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.
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.
Earl Giller, MD, 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.
Jennifer L. Good, Director
President and CEO, Trevi Therapeutics
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Jennifer Good is the co-founder of Trevi Therapeutics and serves as the Company's President
and Chief Executive Officer. Trevi is a drug development company founded in 2011 that is
currently focused on developing orphan drugs in kidney disease. Prior to founding Trevi,
Ms. Good successfully led the transition of a publicly traded life sciences company, Penwest
Pharmaceuticals Co., from a development stage company to generating annual revenues in
excess of $50 million with strong profitablility. At Penwest, Ms. Good oversaw the development
of A0001 in Friedreich’s Ataxia from preclinical through a successful Phase 2 trial. Penwest
was sold in the fourth quarter of 2010.
Ms. Good received a Bachelor of Business Administration degree with a Concentration in Accounting from Pacific Lutheran University in 1987 and is a Certified Public Accountant licensed by the State of Washington, although her license is currently inactive. Ms. Good has previously served on the boards of two publicly traded companies. In 2007, Ms. Good received the Connecticut Technology Counsel's Small Business Innovation and Leadership Award.
Ms. Good received a Bachelor of Business Administration degree with a Concentration in Accounting from Pacific Lutheran University in 1987 and is a Certified Public Accountant licensed by the State of Washington, although her license is currently inactive. Ms. Good has previously served on the boards of two publicly traded companies. In 2007, Ms. Good received the Connecticut Technology Counsel's Small Business Innovation and Leadership Award.
Holly Hedrick, MD, Director
Surgeon, Children’s Hospital of Philadelphia
Nicholas A. Johnson, Director
Associate & Senior Mechanical Engineer, Bard, Rao + Athanas Consulting Engineers, LLC, retired
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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.
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.
Steve Klasko, Director
CEO, USF Health
Dean, College of Medicine
University of South Florida
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
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.
Bernard Ravina, MD, MSCE, Director
Medical Director, Translational Neurology, Biogen Idec, Inc
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Dr. Ravina’s research focuses on the development of biomarkers and therapeutics for neurodegenerative disorders.
Dr. Ravina obtained his MD from Johns Hopkins University, completed residency training
in Neurology and a Fellowship in Parkinson’s disease and Movement Disorders at the University of Pennsylvania. Dr. Ravina received a Masters in Clinical
Epidemiology and Biostatistics from the University of Pennsylvania Center for Clinical Epidemiology and Biostatistics. After completing training, Dr. Ravina
moved to the National Institute for Neurological Disorders and Stroke, where he developed a program of phase II clinical trials in Parkinson’s disease, and
had oversight of clinical trials in stroke and ALS. Prior to joining Biogen Idec, Dr. Ravina was Associate Professor of Neurology, Director of the Movement
and Inherited Neurological Disorders Unit, and Associate Chair of Neurology for Clinical Research at the University of Rochester School of Medicine and Dentistry.
FARA Advisors
William Hartnett, Information Technology & Development Advisor
Program Manager, Electronic Data Systems (EDS)
Sally R. Hecht, Organizational Effectiveness Advisor
Owner, Bel-Aire Precision Decisions, L.L.C.
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Since earning a Master of Systems Engineering degree from the University of Virginia,
Sally has applied her strategic planning, organizational effectiveness, decision making,
problem solving, and financial modeling skills in a variety of settings. In her career
with E. I. DuPont de Nemours & Co., the diverse roles Sally assumed in management,
manufacturing operations, information systems, engineering, new product development,
FDA quality control, and finance gave her an appreciation of the importance of
integrating all viewpoints into good decision-making processes. Sally received the
annual ‘Borderless World of Lycra® Award’ in 1994 for “leading processes in all
regions of the world to gain value for consistent and disciplined decision-making and
helping to create a culture of inter-dependency within world-wide project teams.” In her
role as senior business consultant and financial analyst, she led competitive marketing
assessments, helped identify the risks and opportunities of proposed chemical research
projects, assisted in generating and evaluating strategic options, created business
simulation models, and prepared project economic models and analyses.
After retirement from DuPont, Sally started her personal consulting company, Bel- Aire Precision Decisions, L.L.C. Her consulting focuses on advising on organizational effectiveness methods, leading decision and risk making processes, and creating unique computer-based simulation models. Clients have included E. I. DuPont de Nemours & Co., Invista, Mustang Engineering, Owens-Illinois, M7 Aerospace, and Cotton Inc. Parallel to her educational and professional endeavors, Sally experienced the joys and concerns of mothering her four children who are now parents themselves. Sally lives in Phoenix, AZ, where her husband, Sidney Hecht, is Director of the Center for Bioenergetics at Arizona State University. The Hechts are blessed with a blended family of five children and eleven grandchildren.
After retirement from DuPont, Sally started her personal consulting company, Bel- Aire Precision Decisions, L.L.C. Her consulting focuses on advising on organizational effectiveness methods, leading decision and risk making processes, and creating unique computer-based simulation models. Clients have included E. I. DuPont de Nemours & Co., Invista, Mustang Engineering, Owens-Illinois, M7 Aerospace, and Cotton Inc. Parallel to her educational and professional endeavors, Sally experienced the joys and concerns of mothering her four children who are now parents themselves. Sally lives in Phoenix, AZ, where her husband, Sidney Hecht, is Director of the Center for Bioenergetics at Arizona State University. The Hechts are blessed with a blended family of five children and eleven grandchildren.
Marianne Wilcox, Information Technology Advisor
Enterprise Architect, Electronic Data Systems (EDS)
FARA Development Advisory Board
Bob Basham
Founder, OSI Restaurant Partners
Mary Caruso
Small Business Owner
Dave Colletti
Senior Director, MillerCoors
Jim Courier
InsideOut Sports and Entertainment
Chip Diehl Br Gen Ret.
Retired US. Air Force
Ron Duckstein
Joint Venture Partner, Outback Steakhouse
Herman Fernandez
Vice President of National Accounts, Southern Wine & Spirits of Florida
Skip Fox
President, Fleming's Prime Steakhouse
Paul Jacobs
President, TSC Jacobs
Dave Kingston
President, Kingston Companies
Sandy Lane
Small Business Owner
Kent Little
Joint Venture Partner, Outback Steakhouse
William Krutzer
Louisiana State Commissions
Fred Paglia
Vice President, Sales & Mkg, Kraft North American Foodservice
Billy Rosenthal
Chairman, Standard Meat Company
Douglas Rothschild
Principal, CLW Real Estate Services Group
Steve Shlemon
President, Carrabba's Italian Grill
Jeff Smith
President, Outback Steakhouse
Glenn Stearns
Chairman, Stearns
Chris Sullivan
Founder, OSI Restaurant Partners
Irene Wenzel
Chief Procurement Officer, OSI Restaurant Partners
Ted Yost
Vice President of National Sales, Coca-Cola North America
FARA Executive Staff
Ron Bartek, President
Jennifer Farmer, MS, CGC, Executive Director
Bronya Keats, MD, Chief Research Officer
Giovanni Manfredi, MD, Chief Scientific Officer
Raychel Bartek, Co-Founder and Patient-Family Liaison
Felicia DeRosa, MPA, Program Director
Kyle Bryant, Ride Ataxia Founder & Director
Jamie Young, Office Manager
