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FARA's Leadership & Staff


Ronald J. Bartek

Retired U.S. Government Official; Business Consultant

Mr. Ronald Bartek is FARA's Co-founder and President; Chairman of the Board of the National Organization for Rare Disorders (NORD); 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, and 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.

Paul Avery

Chairman of the Board
CEO – Avery Management Group

Prior to his retirement in July, 2009, Paul E. Avery served as Chief Operating Officer of OSI Restaurant Partners, Inc. since May 2005, including operation of Outback Steakhouse, Carrabba’s Italian Grill, Bonefish Grill, Cheeseburger in Paradise, Lee Roy Selmon’s, Ala Carte Pavilion and Outback International. He was promoted to Chief Operating Officer of Outback Steakhouse, Inc. January of 2004 and served as President of Outback Steakhouse, Inc. since April of 1997. Paul was elected to the Board of Directors in 1998 and served until April of 2004. From 1990 to 1993, Paul was the Director of Operations.Paul Avery has an Associate Degree in Hotel and Restaurant Management at Middlesex County College in New Jersey and a Bachelor of Science Degree at Kean University in New Jersey.

He currently serves on the Board of Directors for Suntrust Bank – Tampa Bay, Health Innovations Insurance, and the Friedreich’s Ataxia Research Alliance (FARA). Additionally, he is a Trustee for Paul Smith’s College NY, and serves on the Advisory Boards for CLW Real Estate Group and Front Burner Brands.

Marilyn E. Downing

Secretary / Director
Teacher/ Diagnostician, Special Education

Mrs. Marilyn Downing taught special education classes in the Buffalo and southern California areas and was an Education Evaluator for the Board of Cooperative Educational Services (BOCES) in Western New York. She received her undergraduate degree in Exceptional Education from the University of St. Joseph, West Hartford, CT and her Masters degree in Special Education, SUNY College at Buffalo. Mrs. Downing and her husband, Terry, have two children, John (1984) and Bridget (1986). Bridget was diagnosed with Friedreich's ataxia in 1996. Mr. and Mrs. Downing began fundraising for FA research and were founding members of FARA in 1998. She continues to serve as Secretary of the Board of Directors.

Ruth Acton


Prior to serving on FARA's Board, Ruth Acton worked for Schering-Plough Corporation in various audit, finance and accounting roles. Ruth resides in Michigan with her sons, Jack and Colin DeWitt. When Jack was diagnosed with Friedreich's ataxia in 2010, Ruth joined the strongly engaged volunteer community to support FARA's mission to cure FA.

Dr. Sanjay Bidichandani

Scientific Director
Section Head of Genetics, University of Oklahoma
College of Medicine, Department of Pediatrics

Sanjay Bidichandani received his medical degree from the University of Pune (India) and a PhD in Medical Genetics from the University of Glasgow (Scotland, UK). Following postdoctoral fellowship training at the Baylor College of Medicine, where he was part of the group that discovered the gene for Friedreich ataxia, he established his research lab at the University Of Oklahoma College Of Medicine. For two years (2011-2012) he served as the Vice President for Research at the Muscular Dystrophy Association (MDA). He is currently the CMRI Claire Gordon Duncan Chair of Pediatric Medical Genetics and Professor of Pediatrics and Biochemistry & Molecular Biology at the University Of Oklahoma College Of Medicine. His research over the past 15 years, funded by grants from the National Institutes of Health, FARA and MDA, has been focused on characterizing the genetic and epigenetic defect in Friedreich ataxia. He has served on the Medical Advisory Committee of the MDA, and as the Assistant Dean in the College of Medicine at the University of Oklahoma. In addition to being on the Board of Directors, he currently serves as a member of the Scientific Review Committee of FARA. He has mentored several PhD students and postdoctoral fellows, and has received numerous teaching and research awards.

Brigid T Brennan, Esq

Director/In-House Counsel/Advocacy

Brigid T Brennan brings her legal training and passion for advocacy to the Board. As a former Assistant District Attorney in the Bronx, she investigated and tried misdemeanor and felony cases. She also worked for Matthew Bender & Co, helping to revise a legal treatise on evidence rules. When she left to raise her family, Brigid continued her passion for the law helping to identify, draft and advocate for legal changes that would benefit the lives of women, children and the elderly. Her commitment to the community includes numerous volunteer leadership roles in the government, non-profit and religious sectors.

Brigid has a B.A. from the University of Rochester and a J.D. from Fordham University. She is a member of the bar in New York & New Jersey.

Jennifer L. Good

President and CEO, Trevi Therapeutics

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.

Thomas Hamilton

CEO and President of Conforms Inc.
CEO of Esser-Werke GmbH &Co KG

Holly Hedrick, MD

Pediatric Surgeon and Louise Schnaufer Endowed Chair
in Pediatric Surgery, The Children’s Hospital of Philadelphia

Derek G. Hennecke


Derek Hennecke was the founder of a contract development manufacturing company specialized in developing clinical Phase I-III drug products. Derek started the company in 2006 and sold it to a large multinational in 2016.

Derek began as a molecular biologist developing APIs in the late 1980’s. Fluent in four languages, he developed international joint ventures and pharma services businesses around the world, including Canada, Germany, The Netherlands, Mexico and Egypt.

Dr. Steve Klasko

President, Thomas Jefferson University
President & CEO, Thomas Jefferson University Hospital System

Dr. Stephen K. Klasko is President and CEO of Thomas Jefferson University and the TJUH System, located in Philadelphia, PA. Thomas Jefferson University Hospital is ranked among the Top 20 hospitals nationwide by US News & World Report. Thomas Jefferson University includes Jefferson Medical College, one of the largest private medical schools in the country, and the Jefferson Schools of Nursing, Pharmacy, Health Professions, Population Health and the Graduate School of Biomedical Sciences. With a degree in medicine from Hahnemann University and an MBA from the Wharton Business School at the University of Pennsylvania, Dr. Klasko is using his unique blend of experience to bridge the art and science of medicine with today’s business and technology challenges. He earned his bachelor’s degree in chemistry and biology from Lehigh University.

Dr. Klasko is recognized as a national leader in healthcare management and is passionate and optimistic about the transformation of healthcare delivery, education, and the use of technology to create and enable new models. He has been appointed a trustee for the Certification Commission for Healthcare Information Technology and was named by Healthcare IT News as one of the ten rising stars in healthcare information technology. For the previous nine years, Dr. Klasko served as the CEO of USF Health and Dean of the Morsani College of Medicine at the University of South Florida. Prior to joining USF, he held several leadership positions in the College of Medicine at Drexel University and served as CEO of Drexel University Physicians.

Dr. Klasko has served as President of the Maimonides Society, an organization of physician volunteers, and is the founding President of Spirit of Women, a grassroots woman’s health marketing and health improvement program. He is married to Colleen Wyse, a magazine publishing executive and has three children: Lynne, David and Jill.

Geoffrey Levitt

Senior Vice President and Associate General Counsel,
Regulatory & Policy, Pfizer, Inc

Mr. Levitt is Senior Vice President and Associate General Counsel for Regulatory, Environmental, and Global Supply at Pfizer, where he is responsible for managing global legal support for regulatory, clinical, medical, safety, manufacturing and environmental operations. In that capacity he serves on the company’s Executive Risk-Benefit Committee, Clinical and Medical Excellence and Innovation Board, and Promotional Policy Committee. He has a longstanding interest in rare disease drug development and has worked on a wide variety of orphan and rare disease matters over the past twenty-five years.

Mr. Levitt has published and lectured extensively on regulatory law. He is a past member of the editorial board of the Food and Drug Law Journal and a current member of the editorial board of the FDA Advertising and Promotion Manual. He is a member and past Chair of the Board of the Food and Drug Law Institute and received the Institute's 2009 Distinguished Service and Leadership Award. He also serves as Chair of the PhRMA Law Section Executive Committee. His publications include the book Competitive Challenges in the Drug Approval Process: Generics, Hybrids and Follow-on Biologics (2005), the chapter “Drugs: INDs and Full NDAs” in Food and Drug Law and Regulation (2d ed. 2011) (with James Czaban), and the chapter "The Drugs/Biologics Approval Process" in A Practical Guide to Food and Drug Law and Regulation (4th ed. 2012). He earned his J.D. from Harvard Law School and his B.A. from Columbia University. He is married with two daughters and resides in the Princeton, NJ area and in New York City.

Dr. James McArthur, PhD

Chief Scientific Officer Cydan Development Inc.

Dr. James McArthur is a founder and the Chief Scientific Officer of Cydan Development, an accelerator for the development of therapeutics for rare diseases. Dr. McArthur is also a founder of Vtesse Inc, a biotechnology company developing treatments for lysosomal storage diseases, including Niemann Pick disease type C, and he was the founding employee and Chief Scientific Officer of Synovex Corp, now Adheron Therapeutics, focused on fibroblast mediated diseases. Previously, Dr. McArthur served as Vice President of Preclinical Development for Phylogix Inc, a stem cell biology company, and was the Acting Head of Research and Principal Scientist at Cell Genesys Inc. developing gene therapeutics for the treatment of genetic diseases and cancers. In addition, Dr. McArthur was a Senior Scientist at Somatix Therapy, which was acquired by Cell Genesys.

Dr. McArthur received his BSc in biochemistry and PhD in molecular oncology from McGill University in Montreal and was a postdoctoral fellow at the Massachusetts Institute of Technology in Cambridge and the University of California, Berkeley. He has published and patented work in the areas of immunology, gene therapy, genetic diseases, vascular biology and oncology and during his career, he has consulted for venture capital groups and biotechnology companies in diverse therapeutic areas.

Tony Plohoros

Principal at 6 Degrees PR

Edward Ramsey

Co-Owner and Vice President, Taylor Ramsey Corporation - Retired
Vice President, BEPCO - Timber and Land Development Company

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. Ed knows the urgency in finding a treatment/cure for FA and is working with the dedicated team at FARA to this end.

Pat Ritschel


Pat holds a B.S. in Mechanical Engineering from the University of Illinois and an MBA from Washington University in St. Louis, and has over 20 years of experience in business management, business development, technology licensing, equipment/product sales, and engineering. Pat has plant operations/maintenance experience with Air Products and Chemicals, later joining Monsanto Enviro-Chem Systems where he held a variety of design engineering, sales, and business management positions. In 2003, he relocated to Hong Kong to lead the Asia-Pacific business of Monsanto Enviro-Chem and in 2005, he joined other members of senior management to acquire the company in a management buyout. From 2005 - 2010, Pat led the Asia-Pacific business of the privately held company, establishing local entities and growing the business significantly. Following the sale of the company to DuPont in 2010, Pat relocated to Wilmington, Delaware as Director, Business Development for DuPont Clean Technologies. Pat has served as a Director of Monsanto Far East Ltd, MECS Far East Limited, MECS Shanghai, MECS-Tongren Joint Venture, Monsanto-DMCC Joint Venture, MECS India Private Limited, and MECS Enterprises Private Limited. Pat left DuPont in 2013 and is focused on supporting FARA to find a cure for FA.

James R. Rusche, PhD

Senior Vice President, Director of Research and Development, Repligen - retired

Dr. Rusche has over 30 years experience in pharmaceutical development and biotechnology. He received his PhD from University of Florida and was a postdoctoral fellow at Yale University before joining Repligen Corporation. During his career he co-founded two drug discovery companies, ProsCure and Glycan, and advanced multiple novel drugs from research to clinical trials in the USA and Europe. Dr. Rusche has authored more than 50 original scientific articles and holds numerous patents. At Repligen, Dr. Rusche was responsible for research, drug and product development, and clinical manufacturing. Ten new molecules were advanced from research to clinical trials in immunology, cardiovascular disease, and CNS diseases (spinal muscular atrophy, autism, bipolar disease, and Friedreich’s ataxia).

Dr. Rusche recently retired from Repligen as Senior Vice President, Director of Research and Development. Dr. Rusche has worked on Friedreich’s ataxia drug discovery and development for the last 10 years. This work included advancing the HDAC inhibitors to clinical trial in Friedreich patients and licensing the program for further development. Dr. Rusche is also a member of the FARA Scientific Advisory Board serving on imaging, biomarker, and clinical development committees.

Ron Bartek


Giovanni Manfredi
, MD
Chief Scientific Officer

Ruth Acton
Director of Finance Administration

Kyle Bryant

rideATAXIA Founder & Director

Ann Musheno

Manager of Grassroots Fundraising

Kim Powell

Communications Coordinator

Lawrence Phillips

Graphic Support

Jennifer Farmer
Executive Director

Bronya Keats
, MD
Chief Research Officer

Felicia DeRosa
Vice President- Fundraising and Communications

Susan Walther

Director of Patient Engagement

Jamie Young

Director of Special Events

Erin Goerss

Administrative Assistant & Gifts Processor

Blair DeSaw


Mary Caruso, Fundraising Advisor
Small Business Owner

Thomas A. DeCotiis, PhD, Strategic Planning Advisor
Founder and Chief Executive Officer, CorVirtus

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.

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.

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.

Laura Kalick, Financial and Tax Law Advisor
Nonprofit Tax Director, BDO Seidman, LLP

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.

Sandy Lane, Fundraising Advisor
Small Business Owner

Peter Pitts, Government and Regulatory Affairs Advisor
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

  • 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.

Marianne Wilcox, Information Technology Advisor
Enterprise Architect, Electronic Data Systems (EDS)

David Woods, PhD, Communications Advisor
CEO of Healthcare Media International, Inc

David Woods, PhD, is the CEO of Philadelphia-based Healthcare Media International, Inc. The author of four books and more than 100 articles, editorials and reviews in peer-reviewed healthcare publications, he has served as contract editor and publisher of Philadelphia Medicine since 2002. He is a former editor-in-chief of the Canadian Medical Association Journal, and board member of the American Medical Publishers Association. He is a Fellow of the College of Physicians of Philadelphia. You can find out more at

FARA Founding Board of Directors

Ronald J. Bartek, President / Director / Co-Founder
Retired U.S. Government Official; Business Consultant

Grant Curtis, Vice President / Director
Retired Executive, Coca-Cola Co.; Business Consultant

Marilyn Downing, Secretary / Director
Teacher / Diagnostician, Special Education

Terrence Downing, Treasurer
Certified Financial Planner and Certified Public Accountant

Raychel Bartek, Director / Co-Founder
US House of Representatives Staff Member

Mary Caruso, Fundraising Director
Small Business Owner

Fraser Goodmurphy, Communications Director

Sandy Lane, Director
Small Business Owner

Martin Litke, Director
Founder Seek A Miracle (SAM)

Rochelle Litke, Director
Founder Seek A Miracle (SAM)

Dr. Bronya Keats, Scientific Director
Geneticist, Louisiana State University

Dr. Massimo Pandolfo, Scientific Director
Neurologist, University of Montreal

Dr. Robert Wilson, Scientific Director
Geneticist, University of Pennsylvania