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FARA's Leadership & Staff

ProfileRonald J. Bartek

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

More about Ron
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

More about Paul
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

More about Marilyn
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
Director of Finance Administration and Human Resources

More about Ruth
Prior to serving on FARA's Board, Ruth Acton worked for Schering-Plough Corporation in various audit, finance and accounting roles. Ruth is a graduate of the University of South Carolina’s Master in International Business Studies program. When her son was diagnosed with Friedreich's ataxia in 2010, Ruth joined the strongly engaged FA community by volunteering to help support FARA’s operations. Ruth officially joined the FARA staff in 2018 and continues to serve as a Director and FARA’s Treasurer.

Dr. Sanjay Bidichandani

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

More about Sanjay
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

General Counsel/Director of Advocacy/Board Director

More about Brigid
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.

More about Alex
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

More about Jennifer
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

More about Derek
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

More about Steve
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

More about Katherine
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.

James McArthur, PhD

Director
President and Chief Executive Officer of PepGen

More about James
James McArthur currently serves as President and Chief Executive Officer of PepGen and serves on the company’s Board of Directors. James has 25+ years of industry experience, has cofounded 5 biotechnology companies, 3 of which were acquired, and has served as a Director of two companies through successful initial public offerings. He was founding CEO of Imara, a public company developing therapies for sickle cell disease and beta-thalassemia, co-founder and President of R&D of Cydan, a rare disease accelerator, and founding CSO of Synovex/Adheron, a rheumatology therapy company acquired by Roche. Prior to these companies, James held senior research leadership roles in several pioneering gene and stem cell therapy companies. He was a Venture Partner at RA Capital and an entrepreneur in residence at HealthCare Ventures. James was previously a post-doctoral fellow at MIT and UC Berkeley working with Drs. David Raulet and Nobel Laureate James Allison, before which he received his PhD in molecular oncology and BSc in biochemistry from McGill University in Montreal.

Tony Plohoros

Director
Principal at 6 Degrees PR

Pat Ritschel

Director
 

More about Pat
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

More about James
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

More about Ed
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
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.
 
Jennifer Farmer
, MS
Chief Executive Officer
View Bio
Jennifer Farmer is the Chief Executive Officer of the Friedreich's Ataxia Research Alliance. Jennifer has a Master's degree in Genetic Counseling and prior to joining FARA she worked at the University of Pennsylvania and Children's Hospital of Philadelphia. As a genetic counselor, Jennifer developed a special interest in neurogenetic conditions and then went on to establish and coordinate clinical and research programs for individuals and families diagnosed with Friedreich Ataxia (FA) and other neurodegenerative diseases. Having established relationships with the families who founded FARA and sharing in their vision to treat and cure FA she joined the organization full time in 2006. Jennifer has led FARA's efforts to establish clinical research infrastructure and clinical trial readiness, grown the research grant program from funding <1M annually to >6M annually, led efforts to engage bio-pharma industry in FA drug discovery and development, and ensured highly efficient and transparent organizational growth and development. In her current role at FARA as CEO, she helps to carry out the strategic mission of the organization through leading FARA's research and partnership initiatives.
 
Barbara Tate
, PhD
Chief Scientific Officer
View Bio
Barbara Tate, PhD, is The Chief Scientific Officer of FARA, Previously, she was the Chief of Strategy and a venture partner at the Dementia Discovery Fund (DDF), SV Life Sciences. She has worked in both large and small pharmaceutical companies, where she has held executive positions. She was a founder and the first CEO of Tiaki Therapeutics, a DDF portfolio company. She was also a founder of and the Vice President and Head of Biology at Rodin Therapeutics, an Atlas Venture company, where she also consulted on other portfolio companies. Prior to Rodin, Barbara was Vice President for Research at Satori Pharmaceuticals, a biotech company developing a treatment for Alzheimer's disease. At Pfizer, Barbara managed the neurodegenerative disease area group in Groton, CT. Prior to working in industry, Barbara was an academic researcher at Brown Medical School and Harvard Medical School. Barbara has a BA in Biology from Beaver College, a PhD in Physiology for the University of Delaware, and completed a postdoctoral fellow at Harvard Medical School.
 
Ruth Acton
, MIBS
Director of Finance Administration and Human Resources
View Bio
Prior to serving on FARA's Board, Ruth Acton worked for Schering-Plough Corporation in various audit, finance and accounting roles. Ruth is a graduate of the University of South Carolina’s Master in International Business Studies program. When her son was diagnosed with Friedreich's ataxia in 2010, Ruth joined the strongly engaged FA community by volunteering to help support FARA’s operations. Ruth officially joined the FARA staff in 2018 and continues to serve as a Director and FARA’s Treasurer.
 
Elisabetta Soragni
, PhD
Director of Research
View Bio
Elisabetta (Liz) Soragni is the Director of Research of the Friedreich's Ataxia Research Alliance. Dr. Soragni completed her Ph.D. and undergraduate studies in Italy at the University of Parma. She did her post-doctoral training with Dr. Peter Geiduscheck at the University of California San Diego, on the mechanism of RNA polymerase III transcription. She then joined the laboratory of Joel Gottesfeld at the Scripps Research Institute as a Research Associate and later as a Staff Scientist. She became interested in triplet repeat diseases with particular focus on Friedreich's ataxia (FRDA). Dr. Soragni studied the mechanism of FXN gene silencing in FRDA and contributed to the development of HDAC inhibitors as potential treatment for this disease. She developed cellular models of triplet repeat diseases suitable to study disease mechanism and for drug screening. She was awarded several fellowships from NAF, FARA, Ataxia UK, Ataxia Ireland and GoFAR to study the mechanism of action of HADC inhibitors in reversing FXN gene silencing. Dr. Soragni has authored numerous research articles and served as ad-hoc reviewer for scientific journals and funding agencies. At FARA, Dr. Soragni's role involves the identification of research priorities to fulfill the organization's mission of developing effective treatments for FRDA, and the management of FARA's grant program. She is also directing several high priority research projects to fill gaps in FRDA research areas not fully addressed by investigator-initiated programs.
 
Myriam Rai
, PhD
Director of Global Relations & Initiatives
View Bio
Dr. Rai completed her undergraduate studies in Beirut, Lebanon and moved in 2001 to Belgium where she has joined the laboratory of Professor Massimo Pandolfo at the Université Libre de Bruxelles (ULB) in 2002. This is where her journey in FA started... She studied the mechanism of frataxin gene silencing in cellular and animal models and contributed to the development and validation of small molecules as potential treatment for FA in Pandolfo’s lab, in collaboration with academic and non-academic partners. Dr. Rai obtained her Ph.D. with a thesis entitled Overcoming frataxin gene silencing in Friedreich ataxia with small molecules: studies on cellular and animal models. She was awarded fellowships from GoFAR, FARA, Ataxia UK and ABMM (Belgian Association for neuro-muscular diseases). Since 2010 she has served as administrative and scientific officer in the European Friedreich's Ataxia Consortium for Translational Studies (EFACTS), a collaboration of clinical and basic scientists to perform translational research in FA initially funded by the European Union. Dr Rai has also been involved in several clinical trials in FA at the ULB University Hospital Erasme.

Working with FARA, Dr. Rai will be responsible for developing relationships with non-US key stakeholders: scientists, clinicians, pharmaceutical and biotechnology companies, patient advocacy organizations and government agencies. She will identify new possibilities, partners and ideas to advance FARA’s research priorities on a global scale and accelerate research towards a cure for FA.
 
Layne Rodden
, PhD
Director of Patient Engagement
View Bio
Dr. Rodden completed her undergraduate studies in biochemistry at the University of Oklahoma in Norman, OK in May 2015. She started graduate school in July of 2015 at the University of Oklahoma Health Sciences Center in Oklahoma City, OK. To complete her dissertation project, Dr. Rodden worked in the lab of Dr. Sanjay Bidichandani where she studied genetic and epigenetic regulation of the FXN gene in Friedreich’s ataxia. Outside of the research lab, she enjoyed being involved with the FA community and spoke at grass roots FA fundraisers, volunteered at Ride Ataxia events, and helped to launch the FARA Minutes of Science series. Dr. Rodden received several awards for presentations on her research and developed a skill and a love for communicating science, especially to lay audiences. After successfully defending her thesis entitled “DNA Methylation in Friedreich Ataxia” in May 2021, Dr. Rodden started a clinical post-doctoral research fellowship at the Children’s Hospital of Philadelphia under the mentorship of Dr. David Lynch. Her projects focused on clinical research and clinical trial design including a study on mechanisms of vision loss in Friedreich’s ataxia.

Working with FARA, Dr. Rodden will be responsible for ensuring that the voice of the patient is heard in the drug development process. She will identify and facilitate opportunities for patients/families, pharmaceutical companies, and other stakeholders to communicate with and learn from each other and will create educational materials that will advance FARA’s priorities and accelerate research towards treatments for FA.
 
Cait Monette

Director of Clinical Operations
View Bio
Cait joined FARA in 2022 with over 10 years of industry experience in global clinical research studies, including phase I-IV drug and PMA device trials (first-in-human through post-market). Her experience encompasses perspective working in small startup, large corporate, and investigative site settings. With FARA, Cait will be responsible for leading the global effort to establish a Friedreich’s Ataxia Global Clinical Consortium (FA-GCC), ensuring that the necessary operations and infrastructure are in place to support the scientific and strategic goals of the consortium. Cait holds a Bachelor of Science in Genetics and Cellular Development from the University of Minnesota.
 
Felicia DeRosa
, MPA
Vice President- Fundraising and Communications
View Bio
Felicia has been a member of the FARA team since early 2008, serving in a variety of fundraising, communications and operations capacities for the organization. She enjoys collaborating with an active and dynamic FA community, to support FA research advancement. Prior to Felicia's work at FARA, she spent eight and a half years as a Research Data Coordinator at Memorial Sloan Kettering Cancer Center, working in medical oncology clinical trials. Felicia has a Master of Public Administration from NYU's Wagner School of Public Service.
 
Jamie Dean

Executive Administrative Assistant & Director of Special Projects
View Bio
Jamie joined the FARA team in 2010 and currently serves as FARA's Executive Administrative Assistant & Director of Special Projects. Throughout her time with the organization, Jamie has held a number of different roles and responsibilities including Office Management, Grassroots Fundraising, Patient Symposium and Scientific Conference Management, and Event Coordinator for the rideATAXIA program. Prior to joining FARA, Jamie earned a Bachelor's Degree in Public Relations from Illinois State University and interned at the University's Conference Management Department.
 
Kyle Bryant

rideATAXIA Founder & Director
View Bio
Kyle graduated from the University of California at Davis with a degree in Civil Engineering. He worked for 5 years as an engineer before finding his calling through cycling and spreading empowerment to others. As the founder/director of rideATAXIA, Kyle and his team produce family friendly bike rides across the country to empower those with FA and raise funds for research. Kyle is also the director of FARA's Ambassador Program which welcomes people who live with FA and are 18 or older to learn to represent the community when needed.
Kyle's favorite place to be is on his Catrike and he is probably on the road or bike trail at this very moment.
 
Ann Musheno

Manager of Grassroots Fundraising
View Bio
Ann Musheno started at FARA in 2015 after completing her B.A. in Journalism at Northeastern University. Through the university's Co-op program, Ann worked in fundraising and event planning at the National Alliance on Mental Illness of Massachusetts, NPH USA, and Friends of Fort Point Channel. Ann is a local to FARA's main Downingtown, PA office, growing up less than a mile away!
 
Erin Goerss

Database Manager/ Development Associate
View Bio
Erin Goerss started with FARA in 2015 as the Gift Processor and Administrative Assistant and currently serves as the Database Manager/ Development Associate. Erin received her B.A. and M.A. from Temple University in Philadelphia, PA and previously worked in admissions for a cyber charter school.

Alexandria Kinsey

Communications & Social Media Coordinator
View Bio
Alexandria is a dynamic and multifaceted Marketing, PR, & Communication Leader with a legacy of empowering clients by fueling engagement across the social and digital stratosphere. Her expertise spans all facets of PR and communication in addition to digital strategy, social media and email marketing, event coordination, market analysis, content management and more. Alexandria holds a Bachelor of Science in Communication with a focus in Public Relations from Radford University, and she keeps her thumb on the heartbeat of new market conditions and consumer demands.

Naseem Baksh

Administrative & Program Assistant
View Bio
Naseem Baksh joined FARA in 2022 as the Administrative & Program Assistant. Prior to joining FARA, Naseem worked for Philadelphia Parks and Recreation and its non-profit partner, Fairmount Park Conservancy. Naseem graduated from Saint Joseph's University with a B.S. in Business Administration.
 
Blair DeSaw

Webmaster
View Bio
After an early start in military aviation, private security, and law enforcement, Blair became a programmer/consultant as an autodidact in the late 1980s. Managed 3 Radio Shack Stores - 1990-1995.  Software Applications Administrator, Samsung Electronics - 1995-1999.  Programmer Analyst II / Senior Programmer Analyst / Systems Specialist at A.M. Best - 1999-2008.  Webmaster at FARA 2009-present.
 
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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