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What is Friedreich's Ataxia?

What is FA?

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich's ataxia.
 

Learn more about FA

Most individuals have onset of symptoms of FA  between the ages of 5 and 18 years. Adult or late onset FA is less common, <25% of diagnosed individuals, and can occur anytime during adulthood. FARA is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms.
 

The Signs & Symptoms of Friedreich's Ataxia are:

  • loss of coordination (ataxia) in the arms and legs
  • fatigue - energy deprivation and muscle loss
  • vision impairment, hearing loss, and slurred speech
  • aggressive scoliosis (curvature of the spine)
  • diabetes mellitus (insulin - dependent, in most cases)
  • serious heart conditions, including  hypertrophic cardiomyopathy and arrthymias

These symptoms are not present in all individuals with FA, for example diabetes occurs in about 10-20% of individuals with FA. The intellectual capabilities of people with Friedreich's ataxia remain completely intact. The progressive loss of coordination and muscle strength leads to muscle incapacitation and the eventual full-time use of a wheelchair. Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.
 
 
 

Genetic testing analyzes the FXN gene, which is the only gene identified to cause Friedreich's ataxia.


Positive genetic test results for Friedreich’s ataxia usually contain two numbers that indicate presence of the disease. What do these numbers mean? Our genetic code is spelled out along the double helix of our DNA by triplet combinations of four nucleotides labeled A, T, C, and G. At the key place in the FXN gene of a person not affected with the disease, only a dozen or so triplet combinations of the nucleotides GAA would be found. In a person affected with FA; however, this combination of the GAA nucleotides is usually repeated hundreds of times, making it very difficult for the normal part of the gene to be read or "transcribed"; thus, limiting the amount of frataxin protein that can be encoded and formed. {Please see the information under the tab “Effect of genetic mutations” for an explanation on how the GAA repeat expansion silences the FXN gene}

For FA, in 96% of affected individuals, the two FXN gene alleles have GAA triplet repeat expansions that silence expression of the gene, preventing enough frataxin protein made for function in the mitochondria. The two numbers in the genetic test reports refer to the number of GAA triplet repeats on each allele copy of the FXN gene. One number is associated with the allele (gene) inherited from mom and the other number is associated with the allele (gene) inherited from dad. The expanded numbers of the GAA triplet repeats confirm the inheritance of Friedreich's ataxia. Research seems to indicate general correlation between some FA symptoms and the numbers of GAA repeats.

In ~4% of people affected with Friedreich’s ataxia, the genetic test report includes one allele of the FXN gene with a GAA triplet repeat expansion and the other allele with a single nucleotide change, called a point mutation, or a deletion in the FXN gene. Changing a nucleotide of A, T, C or G to another nucleotide often causes a change in the frataxin protein structure; thus, causing a change in frataxin’s ability to execute its function. A gene deletion removes a section of nucleotides, which can also result in loss of FXN gene expression and frataxin protein function.

The effect of genetic mutations

FA is an inherited or single gene disorder.  Mutations or DNA changes in the FXN gene cause FA.

FA is inherited in an autosomal recessive manner, meaning that individuals with FA have two mutated or abnormal copies of the FXN gene, this means both biological parents must be a carrier of the disease for a child to be affected.  It is estimated that 1 in 100 people are carriers, and carriers do not exhibit symptoms of FA.  Each such carrier parent has one mutated gene (allele) and one normal gene (allele) in the FXN gene.  Because each child gets one of the mother’s genes and one of the father’s genes in this location, there are four possible combinations of the genes passed down to the child or a 25% chance that the child will have FA.

The FA  gene mutation  limits the production of a protein called frataxin. Frataxin is known to be an important protein that functions in the mitochondria (the energy producing factories) of the cell. Frataxin helps to move iron and is involved with the formation of iron-sulfur clusters, which are necessary components in the function of the mitochondria and thus energy production. We also know that specific nerve cells (neurons) degenerate in people with FA, and this is directly manifested in the symptoms of the disease.
 


 
 
 

The Treatment for Friedreich's Ataxia

There are currently no treatments for FA. Patients are monitored for symptom management.

FARA is funding research to find treatments and a cure. We believe the treatment era for FA is now! As a result of great advancements to understand the cause of the disease, new treatments are now emerging. These treatments address the causes of FA such as gene mutation, frataxin production, iron sulfur clusters, and mitochondrial function. A full listing of treatment initiatives can be viewed in FARA’s treatment pipeline. Several of these treatments are  in clinical trials which require patient participation.
 
 
 

Ataxia de Friedreich en Español


https://www.nlm.nih.gov/medlineplus/spanish/friedreichsataxia.html
 
 
 
 
 
 
 
 

 

Advocacy

2021 Initiatives
Take Action
Advocacy Partnerships

Our Partners

FARA partners with government agencies, corporations, and advocacy groups that support scientific research aimed at finding treatments and a cure for Friedreich's Ataxia.

We are very grateful for the support from all of our Partners.

Non-profit Advocacy Partners

Government Partners

 

The National Institutes of Health (NIH) is the premier US federal government entity responsible for biomedical research and is the world's largest funder of such research. FARA works very closely with the NIH in many ways. FARA has provided grants to a number of scientists that have used that support to develop the preliminary data they needed to submit successful applications for much larger NIH grants. FARA leadership has served on the National Advisory Council of the NIH National Institute of Neurological Disorders and Stroke and continues to participate in the Council's public meetings. FARA leadership has, at NIH request, made a number of presentations at NIH public forums involving other advocacy organizations, other federal agencies, and representatives of the biopharmaceutical industry. FARA has been active in helping rally public support for the NIH -- twice testifying before congressional appropriations committees to encourage more robust budgets for the NIH and working closely with other organizations such as Research!America in building additional public support for the NIH. To learn more about FARA's relationship with the NIH and FARA's effort to rally support for the NIH, visit our Advocacy page

The Food and Drug Administration (FDA) is the U.S. regulatory agency for food and medical therapies. FARA collaborates with the FDA to help educate FA scientists, pharmaceutical partners, and patient families regarding the regulatory process and to help educate the FDA regarding FA so as to maximize the prospects for successful development and approvals of FA treatments. FARA is also active in advocating for a more robust FDA budget, working closely with the Alliance for a Stronger FDA and Research!America.

Industry Sponsors

We are grateful to our industry partners who sponsored FARA programs in 2020 including rideATAXIA, Energy Ball, the FA Biomarker Meeting, FARA Ambassador Training travel, educational symposia, the Collaborative Clinical Research Network, Biomarker research and the FA Global Patient Registry.

Media Partners

Scientific Advisory Board

The Scientific Advisory Board serves as advisors on FARA’s scientific research priorities, goals and programs as well as medical issues that arise from FA and treatment implementation.

Key Responsibilities:

  • A commitment to FARA's mission; advancing treatments & improving clinical outcomes for individuals with FA.
  • A commitment to helping FARA grow and nurture the FA research community.
  • To promote collaboration in the FA research community.
  • Reviewing grants and making funding recommendations
  • Assessing gaps in research portfolio and making recommendations for new opportunites/research directions

Co-Chairs

Bronya Keats, PhD
Emeritus Professor of Genetics, LSU Health Sciences Center
FARA, Chief Research Officer

Giovanni Manfredi, MD, PhD
Professor of Neurology and Neuroscience
Weill Cornell Medical College

Advisors

Sanjay Bidichandani, PhD
Section Head of Genetics, University of Oklahoma College of Medicine
Department of Pediatrics
FARA, Board of Directors

Joy Cavagnaro, PhD
President
Access BIO

Joel Gottesfeld, PhD
Professor Emeritus
Department of Molecular Medicine
Scripps Research Institute

Sidney Hecht, PhD
Director, Biodesign Center for Bioenergetics
Arizona State University

Arnulf Koeppen, MD
Professor of Neurology and Pathology
Albany Medical College

David Lynch, MD, PhD
Professor of Neurology
Children's Hospital of Philadelphia / University of Pennsylvania

Jane Larkindale, DPhil
Executive Director
Duchenne Regulatory Sciences Consortium at
Critical Path Institute (C-Path)

James McArthur, PhD
Venture Partner
RA Capital Management, LP
FARA, Board of Directors

Marek Napierala, PhD
Department of Biochemistry and Molecular Genetics
University of Alabama

Massimo Pandolfo, MD, FAAN, FEAN
Professor (Clinical)
Department of Neurology and Neurosurgery
McGill University

Mark Payne, MD
Professor of Pediatrics (Cardiology)
Indiana University School of Medicine

Helene Puccio, PhD
Department of Neurobiology and Genetics
Institute of Genetics and Molecular and Cellular Biology

Bernard Ravina, PhD
Chief Medical OfficerPraxis Medicines

James Rusche, PhD
Independent Consultant
Pharma and Biotech Product Development
FARA, Board of Directors

Kevin Whittlesey, PhD
Vice President, Translational Medicine
4D Molecular Therapeutics

Robert Wilson, PhD
Associate Professor of Pathology and Laboratory Medicine
University of Pennsylvania

FARA's Leadership & Staff

ProfileRonald J. Bartek

President/Director/Co-Founder
Retired U.S. Government Official; Business Consultant

Co-founder/President, Friedreich's Ataxia Research Alliance; Board of Directors/past Chairman, National Organization for Rare Disorders; Vice President & Board of Directors, Alliance for a Stronger FDA, Board of Directors, Alliance for Regenerative Medicine; Member, NIH/NCATS National Advisory Council; Vice Chair, NCATS Cures Acceleration Network Review Board; member, FDA/CTTI Patient Engagement Collaborative; 4-year member, NIH Neurological Institute National Advisory Council; former partner/president, business development/government affairs firm; twenty years in federal executive and legislative branches in defense, foreign policy and intelligence (six years on House Armed Services Committee staff; four years at U.S. State Department, one year on U.S. Delegation to Intermediate- Range Nuclear Forces Treaty talks, Geneva; six years as CIA analyst, including a year as Intelligence Community representative to U.S. arms control committees); after graduation from United States Military Academy, West Point, four years as Army officer, as company commander in Korea and Infantry and Military Intelligence officer in Vietnam; Master's Degree, Russian Area Studies - 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

Treasurer
Accountant

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

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.

Alex Fielding

Director
Vice President of Operations, Fielding Manufacturing Inc.

Alex Fielding earned his M.S. in Chemical Engineering from Bucknell University. He started his career in a leadership development program at Saint-Gobain, working in various research, process and manufacturing engineering roles. Alex was diagnosed with Friedreich’s Ataxia in 2014. Upon receiving the diagnosis, he began researching the science behind FA and getting involved with FARA fundraising and advocacy efforts.

Alex is currently the Vice President of Operations at Fielding Manufacturing Inc. – a small, family-owned manufacturer in RI producing custom component zinc castings and plastic molded parts serving a variety of industries. He continues to support FARA as a FA Ambassador (serving on the leadership team for several years), through fundraising campaigns (notably an active member of the Race for Matt & Grace committee, the local RI event fundraising for FARA), and by assisting with various projects and events in the FARA-community. Alex understands the balance between urgency and scientific discipline required to develop treatments for FA.

Jennifer L. Good

Director
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

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

Holly Hedrick, MD

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

Derek G. Hennecke

Director
 

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

Director
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.

Dr. Katherine Mathews

Director
Vice Chair for Clinical Investigation
Director, Muscular Dystrophy Clinic and Iowa Neuromuscular Program
Professor of Pediatrics - General Neurology
University of Iowa Carver College of Medicine

Dr. Mathews has a longstanding interest in neuromuscular diseases, particularly those affecting children. She completed a fellowship in genetics following her training in pediatrics and child neurology. Her initial research activities involved genetic mapping of facioscapulohumeral dystrophy (FSHD). Dr. Mathews then transitioned to clinical research. She has directed a natural history and outcome measure study of the dystroglycanopathies, a group of rare types of muscular dystrophy, as part of the NIH-supported Iowa Wellstone Muscular Dystrophy Specialized Research Center for 15 years. As co-PI of the Iowa MDSTARnet site she has participated in the development and growth of this CDC-sponsored epidemiologic study of muscular dystrophies since 2005. She has also led the University of Iowa's participation in the FARA-sponsored Collaborative Clinical Research Network in Friedreich Ataxia since 2007. Dr. Mathews continues to be active in the clinic, caring for patients with all types of neuromuscular diseases. Her goal throughout all these activities has been to improve care of children and adults with neuromuscular diseases and to support development of the next generation of clinical investigators.

Dr. James McArthur, PhD

Director
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

Director
Principal at 6 Degrees PR

Pat Ritschel

Director
 

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

Director
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.


Board Member Emeritus

Edward Ramsey

Director
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.

 
Ron Bartek

President
View Bio
 
Jennifer Farmer
, MS, CGC
Chief Executive Officer
View Bio
 
Barbara Tate
, PhD
Chief Scientific Officer
View Bio
 
Bronya Keats
, PhD
Chief Research Officer
 
Elisabetta Soragni
, PhD
Director of Research
View Bio
 
Myriam Rai
, PhD
Director of Global Relations & Initiatives
View Bio
 
Ruth Acton
, MIBS
Director of Finance Administration
View Bio
 
Susan Walther

Director of Patient Engagement
View Bio
 
Felicia DeRosa
, MPA
Vice President- Fundraising and Communications
View Bio
 
Jamie Dean

Executive Administrative Assistant & Director of Special Projects
View Bio
 
Kyle Bryant

rideATAXIA Founder & Director
View Bio
 
Meg Malloy

rideATAXIA Event coordinator
View Bio
 
Ann Musheno

Manager of Grassroots Fundraising
View Bio
 
Erin Goerss

Administrative Assistant & Gifts Processor
View Bio
 
Matt Popelka

Communications Coordinator
View Bio
 
Blair DeSaw

Webmaster
View Bio
 
Lawrence Phillips

Graphic Support

 

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

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