Board of Directors
Members of the Board of Directors of CurePSP accept the major responsibility of implementing the mission of the foundation. Board members are actively involved in continually defining and redefining the mission and participating in strategic planning to review purposes, programs, priorities, funding needs, and levels of achievement.
Board members assure that the Board of Directors fulfills the governing responsibilities of the organization. It is responsible for its own operations including education, training and development of Board members and an annual evaluation of its own performance.
Bill McFarland, an industry expert and Principal at CCG Catalyst, brings more than 35 years of proven leadership skills, with profound knowledge and passion for improving the scope of the financial services industry. Bill is responsible for leading CCG Catalyst tactical consultants through conversion, implementation, and process engagements. Bill has negotiated countless contracts and directed over 150 system conversions and consolidations. His ability to prove the most suitable, next best action for a bank, is a second nature process for him. Beyond operations, contracts, and conversions, he has extensive understanding of mergers and acquisitions, information technology, process improvement, profitability enhancement, and organizational development.
Amy worked for over 28 years in the Banking, Financial Markets, and Insurance sectors chiefly as Director of Global Accounts with SunGard Data Systems and with Computer Sciences Corporation, as head of Business Development for the Disaster Recovery Division. She has served on the board of several not-for-profit organizations, including Ronald McDonald House, Kids Helping Kids Art Auction (North Carolina). Amy holds a BS in Business Administration from the University of North Carolina – Chapel Hill.
“The opportunity to serve CurePSP is one I welcome. It is not often that time and circumstance permit giving back and making a contribution with a disease that hits close to home. I’ve had the opportunity to learn from my mother and stepfather; her with Alzheimer’s Disease, him with PSP. For my parents and for the parents and spouses and families of others; I am honored to support the mission of CurePSP.”
Justin is a Vice President at Hammes Partners, a private equity platform focused on the U.S. healthcare market and is primarily involved in the investment activities of the firm. Prior to joining Hammes, Justin worked with the Acquisition and Asset Management groups at Greenfield Partners, a global real estate investment firm. His responsibilities included acquisition and management activities in various types of real estate, including healthcare, hospitality, distressed debt, and land, with responsibility for over $500 million in equity invested. Previously, he worked with Robert W. Baird & Co. in its Investment Banking Group. He earned a B.S. in Accountancy and a B.S. in Real Estate Finance from the University of Illinois, Urbana-Champaign.
Justin has been involved with CurePSP since his father was diagnosed with the disease in 2009. He is currently a Member of the Board as well as the Finance Committee.
Russell Gardner is a principal in Gardner Employment Solutions, LLC, a law firm focusing on advising and counseling management-side clients in all aspects of the employment relationship. He was a partner in the Employment Practice Group of DLA Piper, a global law firm, for more than 25 years before his retirement from the firm in 2015.
Russ is acknowledged by “Chambers USA” as one of the leading lawyers in Maryland practicing management-side employment law. He continues to be honored by his peers through inclusion in “Best Lawyers in America.” He is rated “AV” from Martindale-Hubbell, the highest rating available, and was selected by them as a 2013 Top Rated Lawyer in Labor & Employment. Russ earned his B.A. (History/English) from Alfred University and his J.D. from Syracuse University College of Law.
Russ is a member of the Bars of Maryland and New York. He is admitted to several federal district and appellate courts, as well as the Supreme Court of the United States.
John T. Burhoe
A graduate of Yale University with a major in History plus a Masters in Business from Pepperdine, John Burhoe is a former Naval Officer and executive for Continental and American Airlines. Though “retired” John is an active Partner in a small company and, since 2009, sits on the CurePSP National Board having served as Chairman and currently Chairman Emeritus and member of the Executive Committee.
John is a lifelong history buff speaking frequently on the economic and military history of the United States as well his experiences in the real world of caregiving for his late wife Lou who, for seven years, was under the cloud of progressive supranuclear palsy (PSP).
John has subsequently remarried and lives happily with his wife Carolyn in Dallas, TX.
Everett R. Cook
Everett R. Cook graduated from Dartmouth College and from the Tuck School of Business at Dartmouth. Mr. Cook is a Managing Director and Co-Founder of Pouschine Cook Capital Management, a private equity fund with more than $250 million of capital under management. Prior to co-founding Pouschine Cook in 1998, Mr. Cook was a Managing Director of Ampton Investments, Inc., focusing on middle market private equity recapitalizations and acquisitions, and served as chairman and CEO of Bake Rite Foods, Inc., a portfolio company.
Mr. Cook has extensive experience in financial and operations management across a broad spectrum of industries. Mr. Cook currently serves as Chairman of the Board of Drilltec and as a member of the board of SDI. He was previously a member of the board of MasterCraft Boats, Interplan and Latex Foam International. Mr. Cook is also a board member of CurePSP where he is vice-chairman, a member of the Scientific Advisory Board of the Rainwater Charitable Foundation’s Tau Consortium, and the Cary Institute for Ecosystems Studies, all not-for-profit organizations. He is a former board member of Eaglebrook School, the Dutchess Land Conservancy, and the Initiative to Educate Afghan Women.
Lawrence I. Golbe, M.D.
Lawrence I. Golbe, MD, one of the world’s leading clinical experts in PSP and related neurodegenerative conditions, has joined CurePSP as Director – Scientific Affairs. He succeeds Alexander Klein, PhD, who served for almost four years as head of scientific affairs. Dr. Golbe has long been associated with CurePSP as a board member, Director of Clinical Affairs, and head of its scientific advisory board (SAB). He also serves as emeritus professor of neurology at Rutgers Robert Wood Johnson Medical School, where he teaches, performs research, and has a referral practice confined to PSP and corticobasal degeneration (CBD). Dr. Golbe brings a wealth of knowledge and experience to the job as well as his long affiliation with CurePSP and the tremendous respect of our patients, families, donors, and professionals. We are so excited to have Dr. Golbe’s role here expanded to be Director – Scientific Affairs and look forward to the great work we will be able to accomplish through his leadership.
Lawrence D. Levien
Lawrence D. Levien focuses on the negotiation and administration of collective bargaining agreements and has negotiated a variety of complex multiparty transactions. He also has extensive experience in the negotiation and consummation of corporate acquisitions, bankruptcies, and divestitures as they affect all levels of the employee complement. His practice concentrates on clients encountering major restructuring challenges due to either economic circumstances or industrywide dislocations.
Mr. Levien generally represents employers with multiple union relationships and/or employers party to multiemployer agreements through the auspices of industrywide associations. The interplay between the objectives of his client and the needs of the multiemployer group is a specialized element of his practice.
James G. McClellan, CPA/PFS
Jim graduated from the University of Houston Bauer College of Business, class of 1979. Jim began his CPA practice in 1983, James G. McClellan CPA, in Sugar Land, Texas. His 36 years of business includes the practice of public accounting, financial and estate planning, business consulting and as a state registered investment advisor in Texas, and is a Certified Financial Planner™ practitioner and Personal Financial Specialist (CPA/PFS).
Currently as President and Trustee of the Fred and Mabel R. Parks Foundation, the Foundation is active in making grants primarily in the area of higher education, medical research and services, and in support of social services for the disadvantaged.
Mr. McClellan currently serves on various other non-profit boards including Child Advocates of Fort Bend, Director and Past-President and Blue Cure Foundation, Director and Treasurer.
Ileen Watson McFarland has been a PSP Support Group participant and support group leader for the past 7 years. Through her husband’s five year journey with PSP she experienced the challenges presented as a carepartner and found respite through her involvement with the CurePSP Organization.
Over the past year Ileen has served as the Chair for the CurePSP Patient & Carepartner Advocacy Committee which has been instrumental in providing support to both carepartners and patients. This committee oversees patient and caregiver resources, volunteer recruitment, development and training, peer-organization collaborations, national conferences and international leadership and program development. A major focus is on education for medical and healthcare professionals as well as raising public awareness and communications.
She has been active in the on-going fundraising campaign and sponsored events and created a memorial fund for friends and family to contribute donations to the CurePSP Organization.
Compassion, understanding and the willingness to share experiences with people who are dealing with these diseases has provided them with hope when needed and support when all is lost. This is Ileen’s primary focus.
Maggie Orseth, a consultant with Bain & Company, has worked closely with major pharmaceutical companies to develop strategic plans that treat neurological diseases, including tauopathies like PSP.
She has also worked to identify and overcome regulatory and operational roadblocks in the development of novel treatments at other patient advocacy/research organizations, including Charley’s Fund, which focuses on finding a cure for Duchenne Muscular Dystrophy.
Maggie became familiar with CurePSP after her father passed away from a neurodegenerative protein-misfolding disorder in 2007, and joined the board in March, 2017. She received her BA in Economics in 2010 from the University of Pennsylvania and her MBA from Harvard Business School in 2017.
Brent Bluett, M.D.
Dr. Brent Bluett received his bachelor’s degree in psychology at the University of California at Santa Barbara. He graduated medical school at Touro University with national osteopathic medicine honors as a member of Sigma Signa Phi. He completed neurology residency at the University of Texas Southwestern at Austin, during which he was resident chair of the Texas Neurological Society. Afterwards, he went on to obtain a fellowship in Movement Disorders at the University of California San Diego. Dr. Bluett worked at the Cleveland Clinic Lou Ruvo Center for Brain Health, and recently joined the Stanford Movement Disorders Center, led by Dr. Helen Bronte-Stewart.
Dr. Bluett began seeing CBD and PSP patients during his fellowship, and immediately developed a passion for helping those afflicted by these disorders. He has published several peer reviewed articles and a book chapter on CBD and PSP, and is involved in clinical trials and research initiatives in hopes of finding disease modifying therapy. He helped develop and implement the CurePSP Centers of Care – a national initiative dedicated to helping those with PSP – and is a member of the CurePSP Medical Steering Committee. He is proud to join the outstanding board of CurePSP, to provide better care and hope to CBD and PSP patients and caregivers.
Andy Maus has spent his 20-year career in Human Resources (HR) across multiple Fortune 500 organizations. Currently, he serves as Senior Vice President of HR for Compass One Healthcare, an organization at the forefront of healthcare services, employing over 50,000 associates who serve more than 2,100 hospitals and integrated healthcare systems in 48 states. In his role, he leads the overall people strategy carried out by Field HR, Talent Management, Talent Acquisition, and Learning & Development. Prior to Compass One Healthcare, he spent time at US Foods, where he held a variety of leadership roles across corporate and field HR, and mergers and acquisitions. Andy also spent time at Discover Financial Services and Sears Holdings where he led corporate HR, supply chain HR, and Learning & Development.
Andy holds a B.S. in Psychology and an M.A. in Industrial/Organizational Psychology from Western Michigan University, and an M.B.A. from Northwestern University, Kellogg School of Management.
Andy’s mother-in-law passed away in 2018 after a long fight with PSP. Her mother and sister have also suffered from the disease. He has a passion and dedication to serving the cause to find a cure. He is currently a Board Member, chairs the newly created Talent Committee, and serves on the Finance Committee.
Mana Bhatt Sanghvi
Mana Bhatt Sanghvi has spent the last 20 years building and growing businesses domestically and internationally across Fortune 200 companies, startups, and hyper growth companies. She has focused her career on customer-centric innovation, in industry verticals including health and wellness, consumer and B2B tech, CPG, residential real estate, banking, and most recently, long term care.
In 2010 Mana’s Dad and best friend was misdiagnosed with Parkinson’s and one year later, correctly diagnosed with PSP. She and her sisters spent many years navigating how to support their caregiving Mom and patient Dad in their unexpected path. In her last Christmas with her Dad in 2015, she promised him she would make a difference in helping serve CurePSP families differentially and meaningfully. She’s delighted to join the CurePSP board as a start to delivering on that commitment.
Mana earned her undergraduate degree in Finance and International Business from NYU’s Stern School of Business and her graduate degree in Marketing and Strategy from Northwestern’s Kellogg School of Management. Her happiest moments center around living, laughing, and traveling with her husband and two lovable kids.
Bobby (Robert) Hand, PT, DPT, NCS
Bobby is a licensed physical therapist currently serving as the Movement Disorders Program Coordinator at the VCU Parkinson’s and Movement Disorders Center, a newly named CurePSP Center of Care. In addition to his clinical duties, he works diligently with the movement disorders division to develop programs related to clinical care, clinical research, and community engagement. He also assists various patient-centered organizations, such as Power Over Parkinson’s and PDSELF, to promote self-efficacy of patients and care partners. Bobby is especially passionate about promoting higher intensity exercise at regular frequencies for patients with progressive parkinsonism. This passion has been supported by the CurePSP Patient & Care Partner Advocacy Committee and our new initiatives related to professional education and the advocacy of ongoing skilled services.
Bobby’s call to serve neurologic patients predates his clinical career but he became especially passionate about serving patients with PSP, CBD, and MSA during a brief stint at the University of Pennsylvania’s Center of Care prior to his relocation to Richmond in 2015.
Alexander Pantelyat, M.D.
Dr. Alexander Pantelyat cares for patients with movement disorders such as Parkinson’s disease and related syndromes, essential tremor, dystonia, chorea and normal pressure hydrocephalus. He also provides botulinum toxin injections for movement disorders and is involved in deep brain stimulation programming and intraoperative neurophysiological monitoring.
His research explores atypical parkinsonian disorders, such as dementia with Lewy bodies, progressive supranuclear palsy, corticobasal syndrome/degeneration and multiple system atrophy; cognitive aspects of movement disorders; and music-based rehabilitation of neurodegenerative diseases.
Dr. Pantelyat earned his medical degree from Temple University School of Medicine in Philadelphia, where he was elected a member of the Alpha Omega Alpha Honor Medical Society and received the Matthew T. Moore Prize in Neurology. He completed his residency training in Neurology ?at the University of Pennsylvania in Philadelphia, and a fellowship in movement disorders at the University of Pennsylvania/Philadelphia VA Medical Center.
As part of his fellowship, Dr. Pantelyat also completed the Clinical Research Certificate Program at the Center for Clinical Epidemiology and Biostatistics. He is a 2013 American Academy of Neurology Palatucci Advocacy Leader and grant recipient.
Jessica Shurer, MSW, LCSW
Jessica Shurer, MSW, LCSW is the Center Coordinator and Clinical Social Worker of the UNC Movement Disorders Center, which is both a CurePSP Center of Care and a Parkinson’s Foundation Center of Excellence. Jessica works alongside the movement disorders specialists to address the psychosocial needs of patients and families, such as mood, coping, and connection to community resources. In addition, Jessica coordinates specialty interdisciplinary clinics for Parkinson’s and for atypical Parkinsonism diagnoses, facilitates three community support groups including one for PSP & CBD and one for MSA, works to grow a referral network of Parkinson’s-specialized clinicians across the state and organizes educational programs for patients and care partners. She is especially passionate about end of life care, interdisciplinary care, and mental health.
Jessica serves on CurePSP’s Patient & Care partner Advocacy Committee and Diversity & Inclusion Committee, as well as co-facilitates one CurePSP’s national virtual support groups, created to support patients and families during the coronavirus pandemic.
Jack graduated from Bucknell University (BSBA) and George Washington University (MBA-Int’l Business). He was a Vice President of Owens Corning which included global responsibilities and postings for six years in Athens, Greece to develop business in the Middle East and Africa and for four years in Brussels, Belgium for European marketing. After OC, he engaged in start-ups and was a founder and COO of Wind Energy Corporation.
“My wife, Linda, was diagnosed with PSP in February, 2020. I committed myself to being the best caregiver I can be and to do everything possible to help find a cure. I strongly support and will do my best to forward the mission of CurePSP.”
Honorary Board Members
John C. Steele, MD, FRCP
John Steele is from Toronto and while studying neurology with Drs. Richardson and Olszewski, helped to describe the first cases of progressive supranuclear palsy (PSP) in 1964. In that same year, he learned that Pacific islanders on Guam experienced a similar pathological illness they called lytico-bodig. In 1982, Dr. Steele moved to Guam and began studies of lytico-bodig with the hope of understanding its pathogenesis, and how this one disease gave rise to so many, separate neurodegenerative diseases. By 2014, only a few, elderly Guamanians remained with lytico-bodig. With profound regret, Dr. Steele’s ended his research and left Guam to write about his experiences, to travel, and to be with his family.
HONORARY CHAIR EMERITUS
Stephen G. Reich, MD
Dr. Reich is a nationally recognized expert in movement disorders. He previously served as an associate professor of neurology at Johns Hopkins University. He earned his medical degree from Tulane University and completed his neurology residency at Case Western Reserve University Hospital.
Dr. Reich specializes in movement disorders, including Parkinson’s disease and related syndromes (progressive supranuclear palsy, corticobasal syndrome, multiple system atrophy), tremor, chorea, dystonia and drug-induced movement disorders, among others. He also sees patients in general neurology including gait disorders and dizziness.
He holds the Frederick Henry Prince Distinguished Professorship in Neurology at the University of Maryland.
HONORARY BOARD MEMBERS
Janet M. Edmunson, Med
Janet Edmunson, president of JME Insight, is a trainer, motivational speaker, writer and health promotion professional who is dedicated to using her life experiences and inner values to support the growth and self-esteem of the people her life touches.
Janet took care of her husband, Charles, during the five years when he was fighting a degenerative neurological disease. During that time, she also helped Charles write his book titled Paradoxes of Leadership. In her book, Finding Meaning with Charles, she wrote about how they strived to maintain a positive attitude throughout. Her speaking experience has included keynotes and workshops for various caregiver and disease-oriented conferences.
Murray Goldstein, DO, MPH
For the period 1953-1993, Dr. Murray Goldstein was a commissioned medical officer in the United States Public Health Service (USPHS) and a member of the staff of the National Institutes of Health (NIH); for the final 13 years at the NIH he served as the Director of the NIH National Institute of Neurological Disorders and Stroke. He was an Assistant Surgeon General in the USPHS with the 2 star rank of Rear Admiral. Following his retirement from the USPHS, he served as Director of the United Cerebral Palsy Research and Educational Foundation from 1993-2005 and medical consultant to the United Cerebral Palsy Association. He is now a medical research consultant to several national organizations and the US government.
George S. Jankiewicz
George has more than two decades of experience in helping people meet their financial goals through strategies designed specifically for each family’s needs. George specializes in college planning, portfolio analysis, retirement accumulation, and distribution planning.
George joined United Planners Financial Services of America in 2008 after 12 years as a Senior Manager at Clifton Gunderson LLP, where his practice focused on investment analysis and college financial planning. George is a graduate of Towson University, where he currently serves as an adjunct faculty member teaching the Certified Financial Planner curriculum to future practitioners. He earned his MBA from Loyola College in Maryland.
Active in the community, George is a past board member of the Maryland Financial Planning Association, is the Treasurer of CurePSP and the Welcome One Shelter, and is on the Board of Ministry of St. Matthew Lutheran Church. A native of Baltimore, George resides in Bel Air with his wife Laurie.