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.

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.

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.

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.

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.

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.

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.

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.

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.

• 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.

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.

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 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.