iConquerMS™ Governance

The iConquerMS™ patient-centered governance structure includes a Governing Board and three committees. The majority of the board and committee members are individuals living with MS.

iConquerMS™ committees oversee and advise the Project Team’s activities on research, communications, and membership. These committees were formed to ensure that people living with MS are central to the initiative. Learn more about each committee and its members below.

iConquerMS™ Governing Board

The Governing Board guides the overall policies and direction of iConquerMS™. The board also oversees iConquerMS™ committees, financial matters, and PCORnet activities.

The iConquerMS™ Governing Board members include:

Lisa Emrich, Patient Advocate and Blogger

Lisa Emrich is a patient advocate who has been helping patients educate and empower themselves since 2008. She uses her experience with MS and RA to educate patients and encourage them to take an active role in their own healthcare. Lisa blogs at Brass and Ivory: Life with MS and RA and writes for HealthCentral.com, MultipleSclerosis.net, and RheumatoidArthritis.net. She serves on the board of the nonprofit MS Soft Serve, as well as advisory panels for the National Multiple Sclerosis Society and Rheumatoid Patient Foundation. Lisa uses her knowledge and skills to advise companies on how to better serve patient needs, represents the voice of the patient at conferences and meetings, and has been featured in Momentum Magazine, MS Focus, Arthritis Today, The Monitor, Pharmaphorum, and the Washington Post. Also a professional musician, Lisa continues to perform and teach lessons to aspiring young musicians in Northern Virginia.

Fiona Hoey, Director of Marketing and Media, 50CAN

Fiona Hoey is the Director of Marketing & Media for 50CAN, a nonprofit education advocacy and policy organization. Prior to that, she spent over a decade in television at FOX News covering the big stories of the early nineties through the early aughts. It wasn’t until Fiona moved to Kabul, Afghanistan that she realized her true passion: being a part of something real. TV, she felt, was wonderful in so many ways, but is just “air.” In Afghanistan Fiona launched the Communications Department for the Ministry of Women's Affairs to advocate for and protect Afghani women. Upon returning to the United States, Fiona continued to work in areas that impact a majority of the population: first healthcare, and now, education reform. She received two Emmys for her work in television news and an “Advocate of the Year” award from the National Multiple Sclerosis Society. Fiona has lived in England, Sweden, Saudi Arabia, and the Philippines. She graduated from the University of Virginia with a B.A. in foreign affairs.

Linda Kanner, Retired CEO, Mentor of Early-Stage Entrepreneurs, and Active Nonprofit Board Member

Linda Kanner is a seasoned marketer and manager whose 30-year career includes senior positions in large multi-divisional companies, including 10 years as CEO or COO of three consumer/e-commerce venture-funded companies. She is an active advisor/board member to several early and mid-stage companies. Linda became a member of the board of The Accelerated Cure Project for MS shortly after being diagnosed with MS in 2006. She has a record of success bringing new products to market, repositioning old-line businesses, and starting new ones in industrial distribution, financial services, and retailing/e-tailing. Linda served on the MasterCard national marketing committee, the boards of Yankee 24, Marketing Sciences, the Footwear Retailers and Distributors of America, and the Two/Ten Association, along with several private startup technology companies. She is an overseer of the Huntington Theatre Company and was on the boards of the Commonwealth Institute and Beth Israel, and an overseer of the Beth Israel-Deaconess Hospital/Care Group. She holds an MBA from Harvard, a BA from Cornell, and an MSW from Simmons.

Marcia A. Kean, Chairman, Strategic Initiatives, Feinstein Kean Healthcare

Marcia A. Kean, MBA, has more than 35 years of biomedical and information technology industry experience with commercial and nonprofit organizations, as well as knowledge of the development and implementation of public-private partnerships. She led the communications activities on behalf of the National Cancer Institute’s first-generation bioinformatics program. She served as co-Vice Chair of the Advisory Committee of the Institute of Medicine’s Cancer Informatics Workshop in 2012. She chairs the Advisory Committee of “Turning the Tide Against Cancer Through Sustained Medical Innovation”, a national initiative on science innovation and policy, convened by the Personalized Medicine Coalition, American Association for Cancer Research, and Feinstein Kean Healthcare. She serves as a member of the Policy and Membership Committees of the Health Data Consortium. Marcia holds an M.B.A. from New York University and a B.A. from the University of California at Berkeley.

Revere (Rip) Kinkel, M.D., Director, Multiple Sclerosis Program, University of California San Diego

Revere (Rip) Philip Kinkel, M.D., is Director of the Multiple Sclerosis Program at University of California San Diego. He previously held positions as Medical Director of the Mellen Center for MS Treatment and Research in Cleveland and Division Chief of the section on neuroimmunology and demyelinating disease of Beth Israel Deaconess Medical Center/Harvard Medical School. Rip's research interests range from the development of treatments to ameliorate the course of the disease, to the use of high fields and molecular imaging to better understand MS pathogenesis, to alternate models of care to improve the quality of life for MS patients. He is lead investigator of the ACP-sponsored study network, chief medical officer of the MS-PPRN, and has served on and chaired committees for the American Academy of Neurology, National MS Society, and the Consortium of Multiple Sclerosis Centers. He is also the co-developer of the only online or virtual comprehensive MS Center for MS patients (www.healthcarejourney.com).

Laura Kolaczkowski, Lead Patient Representative

Laura Kolaczkowski’s position as the Lead Patient Representative on the iConquerMS™ Governing Board builds on her knowledge as a Patient Reviewer for PCORI and her training as a PCORI Ambassador. She assisted with ACP’s initial submission of the request for funding the MS-PPRN to PCORI, and has been involved with the development of the materials available through the portal. The iConquerMS™ patient-centered approach to research aligns with her study interests, which focus on communication methods and how online tools can be used by patients and medical personnel to create a common understanding. Laura is actively involved with the online MS community, using social media to share experiences and knowledge about living with multiple sclerosis. Her degree is in communication management from the University of Dayton. She resides in Ohio with her husband, and is the mother of two grown children and three grandchildren.

Joe Laferrera, Partner, Gesmer Updegrove

Joe Laferrera is a partner at the Boston law firm of Gesmer Updegrove LLP, which focuses on technology companies and emerging businesses. In addition to heading the firm's Litigation and Employment Departments, he leads the Data Security and Privacy practice area, and works closely with numerous healthcare clients. Joe is also a member of the OPT-UP Community Advisory Panel and, with other CAP members, provides patient-focused input used in the design and development of a study intended to improve the way MS treatments are chosen. He has spoken about OPT-UP and the MS-PPRN on behalf of the Accelerated Cure Project and at this year's Bio IT World Conference in Boston. Joe lives with his lovely wife, two wonderful daughters, and one crazy dog in Sudbury, Massachusetts.

Robert McBurney, President and CEO, Accelerated Cure Project for MS

Robert McBurney is the CEO of the Accelerated Cure Project for MS (ACP) and the Principal Investigator for the MS Patient-Powered Research Network. He is a neuroscientist with a distinguished career in biomedical research in academic settings and in companies. Prior to joining ACP, Robert co-founded Optimal Medicine Ltd., a UK company developing systems for optimizing the treatment of mental illness. His former positions include: Executive Vice President of TheraGenetics Ltd.; Chief Scientific Officer of BG Medicine, Inc.; Chief Executive Officer of Differential Proteomics, Inc.; and CEO/CSO of Cambridge Neuroscience, Inc. Robert was previously Assistant Director of the UK Medical Research Council Neuroendocrinology Unit and has held positions at the National Institutes of Health (US), Cambridge University (UK), and the University of New South Wales (Australia). He is a Director of Optimal Medicine and a Trustee of the F.W. Olin College of Engineering. Robert received B.Sc. and Ph.D. degrees from the University of NSW, Australia.

Heather Siefers, Senior Manager, Clinical Supplies and Specimen Management, Aeras

Heather Siefers is the Senior Manager of Clinical Supplies and Specimen Management at Aeras. In her role she provides oversight of the acquisition, tracking, transport, and storage of biological specimens and ancillary supplies for active clinical trials and supportive preclinical studies. Prior to joining Aeras, Heather was the Director of Repository Operations at SeraCare BioServices, where she managed the Accelerated Cure Project’s Sample Repository. She has been a member of the International Society for Biological and Environmental Repositories since 2004 and currently serves on the organization’s Board of Directors as the society’s Treasurer. She is a graduate of the University of Maryland with a BS in microbiology and a MS in environmental biology from Hood College. Heather joined the MS community in 2003 when she was diagnosed with relapsing-remitting MS and since that time has been an avid supporter for the development of advocacy and educational programs for MS patients.

Lisa Taylor Skutnik, President, MS Coalition

Lisa Taylor Skutnik is a physical therapist who has over 25 years of experience in healthcare administration. She has managed multiple clinical departments in a variety of healthcare settings across the care continuum.  She holds two graduate degrees from the University of Pennsylvania, in Gerontology and Health Policy and Planning.

Prior to joining the Consortium of MS Centers in April of 2013 as the Chief Operating Officer, Lisa served as the Executive Vice President of Clinical Care for the National MS Society (2011-2013).

iConquerMS™ Committees

iConquerMS™ committees oversee and advise the Project Team’s activities on research, communications, and membership. These committees were formed to ensure that people living with MS are central to the initiative. Learn more about each committee and its members below.

Engagement

Matt Allen G

Matt Allen G is a Multiple Sclerosis patient advocate and has been blogging about MS since his diagnosis in 2010. He has been sharing his story along all the ups and downs of his battle to not let MS prevent him from living life in hopes of inspiring others to do the same. Not only has Matt connected with people from all over the world through blogging but he has also met some of them in person while traveling across the states and even to parts of Europe. He has always enjoyed connecting with others living with MS and  learning about their different experiences in attempt to discover new ways of overcoming MS and helping spread those ideas to others. One of his main goals has always been to encourage people living with MS to be their own advocates and to educate themselves about this chronic illness to the best of their ability with whatever resources they have access to.

Charlie Barron

My name is Charlie Barron.  I was diagnosed with RRMS in 2011.  Before MS I had the honor of serving in the United States Army where I took the opportunity to fine tune my culinary skills.  After leaving the Army, I was privileged to be able to work as a chef in some of Atlanta's most premier restaurants. The MS diagnosis moved me to pursue my entrepreneur side and to become a staunch advocate for people living with MS.  I was introduced to iConquerMS through a focus group I was participating in at the Shepherd Center in Atlanta.   I was immediately drawn to the commitment that iConquerMS has for patient advocacy and empowerment.  I am humbled to have the opportunity to lend my voice to their cause.

Dave Bexfield, Founder, ActiveMSers.org

Dave Bexfield is the founder of www.ActiveMSers.org, a website he established in 2006 to help, motivate and inspire those with multiple sclerosis to stay as active as possible—physically, intellectually and socially—regardless of physical limitations. His motto: Be active, stay fit and keep exploring! An Albuquerque, NM, resident and longtime professional writer, Dave’s efforts have been championed by The New York Times, featured in a half-page promotion in the Wall Street Journal, and highlighted on the cover of the National MS Society's Momentum magazine. Conde Nast Traveler and WebMD also have spotlighted his stubborn defiance and challenges with MS. In 2011, Dave's video recapping his participation in an NIH-sponsored stem cell transplant won fan favorite at the American Academy of Neurology Neuro Film Festival and was used to lobby for health insurance reform on Capitol Hill. Armed with attitude and a pair of forearm crutches, Dave continues to travel the world with his wife Laura, volunteering and speaking out for the cause at every opportunity.

Kathryn Bradbury

Kathryn Bradbury is the Support Groups and Outreach Manger for the Multiple Sclerosis Foundation, which is also known as MS Focus. MS Focus provides support, education, and direct assistance to meet the critical needs of people with MS, through a variety of much needed programs and Services. Kathryn also oversees the development of the quarterly EmpowerSource Newsletter, a unique publication geared towards those with MS who want to feel connected to others with similar experiences. She is also member of MS Focus’ editorial committee for the MS Focus Magazine.  When Kathryn is not working or spending time with her husband and two children, she can be found at the dojo where she recently earned her black belt in Karate. Training has already begun for her second degree. Kathryn’s passion is to reach everyone possible in the MS Community and to help provide them with the tools they need to live their best possible life. 

Cathy Chester

Cathy Chester is an award-winning blogger at an AnEmpoweredSpirit.com where she encourages readers to maintain a positive attitude while living with MS. Cathy is a freelance writer and certified patient advocate whose focus is twofold: To empower and inspire others to advocate for their own healthcare, and to educate audiences outside the MS community about the disease.  She writes for MultipleSclerosis.net and MS News Today, is an ongoing contributor for Mango Health and PatientsLikeMe, a past contributor to The Huffington Post and a former blogger for The Consortium of Multiple Sclerosis Centers. Cathy was featured in two “Ted-like” videos about living with MS for the Consortium of Multiple Sclerosis Center’s ”MS Teamworks” series and was featured in AARP’s “Disrupt Aging” campaign. She was awarded the “Thumbs Up Award” from the International Organization of Multiple Sclerosis Nurses for “being instrumental in advocating and promoting MS nursing” as well as the “Courageous Warrior Award” from B.I.G. (Believe, Inspire, Grow), a 5,000+ member women’s empowerment group. Cathy has been featured in NARCOMS Now, Momentum Magazine, MSAA and Health Monitor. Her work has appeared on numerous websites including MS Connection, Everyday Health, Erma Bombeck’s Writers’ Workshop, Midlife Boulevard, BetterAfter50, The Mighty, BlogHer, Next Act for Women, Women at Woodstock and SheSpeaks. Cathy and her husband were featured on television with NBC correspondent Jean Chatzky as well as New Jersey Caucus with Steve Adubato. She has served on many advisory panels for pharmaceutical companies and health-related initiatives on the importance of including the patient voice and how to better serve the needs of the MS community.

Jennifer Falk MSW,CPHM

Jennifer Falk brings extensive experience and expertise working with the Multiple Sclerosis community and with other populations living with chronic conditions. Jennifer is currently the Director of Development at MS Views and News. She is responsible for the design, development and successful implementation of MS educational programming throughout the United States.  With a career in Social Work of over 15 years, she also led as the Social Work Program Coordinator for the Neuroscience Centers of Florida Foundation. Additionally, she worked as a Lead Medical Social Worker for Baptist Hospital Intensive Care Unit and as a Clinical Social Worker for the Ryder Trauma Center at the University of Miami Jackson Memorial Hospital. A graduate of New York University, Jennifer Falk holds a Master’s Degree in Social Work with a focus on health care management as well as a BS in Psychology from C.W. Post Long Island University. 

Karen Knable Jackson, MS Activist

Karen Knable Jackson graduated from the University of Maryland in 1982 with a bachelor’s degree in kinesiological sciences and worked as a certified athletic trainer for fifteen years. After being diagnosed with MS in 1996, Karen became active with the National Multiple Sclerosis Society (NMSS). Karen has been a member of the National Capital Government Relations Committee since 2006 and member of the Federal Activism Advisory Council since 2012. Since becoming involved with the National Capital Chapter of the NMSS, Karen has welcomed walkers to National Capital’s three day Challenge Walk, testified at an FDA Advisory Board Meeting, and was awarded the National Capital’s 2007 MS Ambassador of the Year Award. In 2012, Karen was inducted into the Society’s Advocacy Hall of Fame. In 2013, she spoke at a Congressional Briefing. Today, Karen is the office manager and administrative assistant for an orthopedic surgeon in Arlington, Virginia.

Nicholas G. LaRocca, Ph.D., Vice President of Health Care Delivery and Policy Research, National Multiple Sclerosis Society

Nicholas G. LaRocca, Ph.D. is a psychologist who has worked in the field of MS for over 30 years. He was an associate professor at Albert Einstein College of Medicine and New York Medical College before joining the National MS Society in 1997. As Vice President of Health Care Delivery and Policy Research, he has responsibility for Society funding of research on symptoms of MS, rehabilitation, epidemiology, psychosocial issues, and health policy. He has a longstanding interest in cognition and co-authored a book on cognitive changes in MS in 2006. In 2011 he was appointed to the National Advisory Board on Medical Rehabilitation Research at the National Institutes of Health and was chairperson in 2013-2014. Nicholas is also co-director of the Multiple Sclerosis Outcome Assessments Consortium, a Society initiative to develop and qualify a new measure of disability for use in clinical trials of MS therapies.

Sara Loud, Chair, Operations and Repository Director, Accelerated Cure Project for MS

Sara Loud is the Repository and Operations Director at Accelerated Cure Project for MS. She is responsible for the day-to-day operations of ACP’s Sample and Data Repository including oversight of the Repository vendors (data management, laboratory, and contract research organization) and clinical sites, as well as collaborating with MS researchers to ensure the selection and distribution of samples and data from the Repository. Sara is the Administrative Official for the MS-PPRN and also manages the general operations activities at ACP including finance and human resources. Prior to joining ACP, she worked in high-tech as an engineering and project manager ensuring the delivery of complex hardware and software projects. Sara holds an MBA from Babson College, as well as a BS and MS in electrical engineering from Northeastern University.

Gina Murdoch, CEO, MSAA

Gina Ross Murdoch is a seasoned executive in non-profit management and currently serves as President and CEO of the Multiple Sclerosis Association of America (MSAA), a national nonprofit organization dedicated to improving lives today for the MS community. Her career includes leadership positions with chapters of the Leukemia and Lymphoma Society as well as the American Diabetes Association. Earlier, she spent 14 years overseeing development activities at a large chapter of the National Multiple Sclerosis Society, leading explosive growth initiatives and ground-breaking strategic projects. An active member of the community, Ms. Murdoch has held several town positions and volunteers for her college alma mater, Drew University.

Lindsey Santiago, Development Associate, Accelerated Cure Project for MS

Lindsey Miller Santiago was born, raised, and currently lives in Boston, MA. She graduated from Babson College in Wellesley with a degree in marketing and entrepreneurship. After several years in the corporate world, Lindsey decided to make the jump to the nonprofit sector. She started at ACP as development associate in the summer of 2012, and loves being involved with the exciting events and programs always going on! Her favorite place in the world is Disney World, she loves anything Harry Potter, and enjoys spending time with family and friends. Her mission is to see a cure for MS in her lifetime, and believes that it will be possible because of the work ACP is doing!

Marc Stecker, Blogger

Marc Stecker has been writing the popular MS-themed blog Wheelchair Kamikaze since 2009. Diagnosed with primary progressive multiple sclerosis in 2003, Marc found that the puzzle of his own disease and that of multiple sclerosis in general awakened his inner scientist, fueling a keen interest in cutting edge MS research with a special focus on outside the box, potentially paradigm shifting ideas and hypotheses. Prior to his diagnosis, Marc had a thriving career in TV and video production, which was unfortunately cut short when he was forced to retire due to his illness. A native New Yorker, Marc spent time in Boston and South Florida before settling back in New York City, where he now resides. He’s determined to see multiple sclerosis vanquished, and relishes the chance to play a role in unraveling the mysteries of the disease.

Tracy Todd, Author, Artist, and Advocate

Tracy A. Todd, author, artist, and advocate, has a strong spirited work ethic in the fight against MS. Diagnosed with MS in 2002, this African-American female has overcome neurological challenges since adolescence, and has been fighting back ever since. The local NMSS chapter regards Tracy as an MS Ambassador, and a newly diagnosed video produced by MSAA features her as a presenter. Tracy served as a facilitator for a SF Bay Area African-Americans with MS Self-Help Group where, during her three years of service, members were not only encouraged to relate on the subject of MS, but also on the nuances of MS within the African-American population. Tracy has had speaking engagements with pharmaceutical companies and healthcare professionals who benefitted from information relayed from the ‘patient-perspective.’ Tracy holds a BS in information systems and resides in Northern California with her husband and two young adult children.

Anita Williams

Bio Coming

Teresa Wright-Johnson

Teresa Wright-Johnson is a married Multiple Sclerosis and Heart Health Advocate.  She was born with a heart murmur and an aortic valve defect.  Teresa was diagnosed with Multiple Sclerosis in 2014.  Teresa believes that her professional experiences and diagnosis have led her to passionately live her truth.

A Rutgers University graduate, Teresa has a strong background in criminal justice and social services.  She is a retired Parole Officer.  Teresa believes that patients must be heard and that their concerns and well being are paramount.  She also believes in the equality and inclusion of people of color and other marginalized groups. Teresa serves as executive board members for her local American Heart Association and the NAACP. She is a speaker, writer, poet and community activist. Teresa is proud to serve on the Engagement Committee for iConquerMS and is happy to be part of a group dedicated to educating, researching and curing MS.  Mary Oliver asked in her poem “The Summer Day”, “Tell me, what is it you plan to do with your one wild and precious life?” Teresa’s answer is to live well, learn much and be an agent for change.

Research

The Research Committee reviews all the questions and research topics submitted by iConquerMS™ members, and develops study plans for the top priority research areas. It is also responsible for oversight and advice on the data acquisition and storage system of iConquerMS™.

This committee is also responsible for advice concerning how iConquerMS™ members receive summaries of their data, as well as insights about how their information compares to other people living with MS. In addition, this committee oversees updates provided to iConquerMS™ members about the research that is conducted with all the pooled data. The Research Committee members include:

Deborah Backus, P.T., Ph.D., Director, Multiple Sclerosis Research, Shepherd Center

Deborah Backus, PT, PhD, is Director of Multiple Sclerosis Research at the Shepherd Center in Atlanta, Georgia. Debbie received her B.S. in physical therapy in 1986, and her Ph.D. in neuroscience in 2004. She has combined her experiences as a physical therapist, researcher, and educator to focus on improving functional and health outcomes for people with neurological injury or disease, specifically related to people with multiple sclerosis (MS) and spinal cord injury (SCI). As part of the Eula C. and Andrew C. Carlos MS Rehabilitation and Wellness Program at Shepherd Center, she is focusing on the assessment of the health and wellness needs for people at varying stages of MS, and the evaluation of rehabilitation and exercise interventions that may be beneficial to people with MS. Her research focus combined with her clinical experience has fueled a passion for facilitating the translation of evidence into clinical practice, including influencing clinicians in practice, payers for reimbursement of evidence-based interventions, and policy makers related to health policy. Debbie has presented both nationally and internationally, and has also published related to this work.

Cherie C. Binns, RN, BS, MSCN, Chair

Cherie C. Binns, RN, BS, MSCN, comes to this project with four decades of nursing under her belt in addition to a degree in gerontology and has been a Multiple Sclerosis Certified Nurse since 2003 continuously. She conducts patient educational programs for various nonprofit organizations and is a "resource finder" for clients who engage her services when developing plans of care or adjusting to a change in status in health. Cherie has been trial coordinator on two multiple sclerosis arena phase I trials and has had training for Phase IIIc and d trails on medications for treatment of multiple sclerosis. She is an independent practitioner working nationwide from her home in southeastern Rhode Island. Married to David for 39 years, the couple has two adult daughters and four grandchildren. Well-connected to Multiple Sclerosis Centers and personnel throughout the USA, she has relationships with Centers doing clinical trials and can act as a liaison.

Farren Briggs, PhD ScM.

Prof. Briggs is an assistant professor in the Department of Population and Quantitative Health Sciences in the School of Medicine at Case Western Reserve University. He has received his undergraduate degree in Biology and Chemistry from the College of the Holy Cross, his Sc.M. in Biostatistics from Brown University, and his Ph.D. in Epidemiology from the University of California, Berkeley. His research focuses on various aspects of multiple sclerosis, for example quantifying the heritability of various aspects of the clinical presentation of multiple sclerosis to understanding the impact of environmental factors on the accrual of disability, all in an effort to advance knowledge on the underlying biological mechanisms that play a role in multiple sclerosis. Prof. Briggs is also a regular scientific contributor to the iConquerMS newsletter. He lives in Cleveland, OH, but loves to scuba dive in the native country of Belize.

Ken Buetow, Ph.D., Director, Computational Sciences and Informatics Program, Complex Adaptive Systems Initiative, Arizona State University

Ken Buetow, Ph.D., has 30+ years’ experience as a data scientist. Formally trained as a geneticist/genomicist, he develops and applies IT infrastructure and analytic approaches to collect, manage, manipulate, and interrogate large, complex biomedical datasets. As part of the Human Genome Project, he created an award-winning capability that was one of the pioneering uses of the Internet in biomedicine to create the human inheritance map. Later, while leading the National Cancer Institute’s efforts in biomedical informatics, he pioneered efforts to connect the global cancer community through community-developed, standards-based, interoperable informatics capabilities that enabled secure exchange and use of biomedical data. He is leading ASU’s Next Generation Cyber Infrastructure effort, creating a 21st century multi-capability data science research instrument designed to leverage “on demand” of computational, storage, software, and human capital in a dynamic manner. Ken received his B.A from Indiana University and an M.S. and Ph.D. from the University of Pittsburgh.

Denise Coleman

Denise Coleman had a long career in higher education and non-profit organization administration. She served in various positions, including Vice President for Institutional Advancement at both public and private institutions and Executive Director of a national foundation to raise funds to support research into major medical illnesses. She served on several non-profit Boards and was a member of the MS Society.

Diagnosed with MS in 1995 and living with chronic pain after 4 spinal surgeries, Denise was forced to leave her career in 1998 due to the progression of both these conditions.

Upon leaving her career, Denise increased her activities with the MS Society and worked closely with volunteers, legislators, and Society staff to advocate on behalf of legislation that would be helpful to people living with MS and fight legislation that would not. She was also very involved in the American Pain Foundation as an advocate and met with legislators, both individually and as a speaker at a special Legislative meeting, and many people living with pain due to a variety of conditions.

Denise is a member of the Government Relations Committee of the LI Chapter of the MS Society, an advocate for the US Pain Foundation, a member of the Transportation Committee on behalf of people with disabilities, and a member of the Board of the Huntington Citizen's Advisory Committee for People with Disabilities.

Joanne Dickson-Smith

Ms. Dickson-Smith is a native of Birmingham, Alabama, now living in Atlanta, Georgia. She is the mother of two adults sons and has lived with Multiple Sclerosis for over 24 years.

Ms. Dickson-Smith received her Masters of Science degree in Public Health Epidemiology/Biostatistics from Loma Linda University.  After joining the United States Public Health Services, Lt. Commander Dickson - Smith worked as a Health Service Officer for the Centers for Disease Control, Center for Chronic Disease Prevention and Health Promotion providing communities assistance in developing health education programs to meet health the challenges and needs of minority, underserved, and underinsured populations.

Since medical retirement from the Public Health Services Ms. Dickson-Smith volunteers as a Support Group leader for the Georgia Chapter of the Multiple Sclerosis Society and CanDoMS.

As an active member of the Shepherd Center MS Wellness program she participates in several classes weekly, personally trains, recruits and encourage others to live their MS life to the fullest

Shawn Feliciano

Shawn Feliciano-Garber brings a wealth of international business and entrepreneurial experience to BBVA Compass, and presents a long history of success in a myriad of unique projects. After receiving her Bachelor of Art degree, she moved to Costa Rica where she built and managed an eco-tourism sport fishing resort. After 14 years of success she moved to Europe to study art and language, at one of the most prestigious art schools in Italy.

Returning to the United States in 2008, Shawn entered the Financial Services industry and earned her Series 6 and 63 licenses. Trilingual (English, Spanish, French), she has received numerous recognitions and awards for her ability to cross cultural lines and establish business relationships in formerly untapped markets.

Shawn was diagnosed with Multiple Sclerosis in 2009, but has used that condition to become a spokesperson and advocate. At that time she also launched her motivational speaking career in 2012, and regularly tells her story to audiences across the United States. Her organization, Hiking for MS, has sponsored numerous events to raise awareness for MS, including an 817-mile hike on the Arizona Trail from Utah to Mexico. She completed “The Big Hike” in 88 days, and was interviewed on various major US television networks. She continues to draw, hike, and run, living her life to the fullest.

Shawn’s current project is the building of a 21-acre vineyard and winery in Sonoita, Arizona, where she lives with her husband.

Sarah Minden, MD

Sarah Minden, MD is a psychiatrist who has worked with individuals with MS and their family members for over 35 years to evaluate, diagnosis, and treat mood disorders, other mental illnesses, and challenging life circumstances. She led the team that developed the evidence-based guideline on psychiatric disorders in MS and has contributed her clinical experience on mood and cognitive disorders through scientific publications and educational materials for clinicians, patients, and families. Sarah’s current research focuses on health services and policy studies which combine analyses of quantitative data from survey and claims databases and analyses of qualitative data from in-depth interviews and focus groups. Sarah is the principal investigator of the Sonya Slifka Longitudinal Multiple Sclerosis Study (Slifka), a longitudinal study of a population-based sample of individuals with MS in the U.S. started in 2000 by the National Multiple Sclerosis Society (NMSS). The Slifka study is helping the field understand more about access to MS and general health care; quality of life and the impact of aging on MS; and the use and cost of disease modifying therapies, rehabilitation, inpatient, outpatient, mental health, complementary and alternative medicine (CAM), and home care services; and the costs of medication, equipment, supplies, home and vehicle modifications, and transportation. The iConquerMS team will soon be starting a new NMSS-funded study with Sarah on use, cost, and preferences for CAM among individuals with MS.

Seth Morgan

Seth Morgan is a Board Certified neurologist and Fellow of the American Academy of Neurology who practiced medicine in the Washington, DC area for twenty-three years.  He is a past-president of the Medical and Dental Staff of Providence Hospital in Washington, DC.  He was diagnosed with MS in 2004 retiring on disability a few years later.  He has been involved in advocacy for people with disabilities serving as a District Activist Leader and Governmental Affairs Committee member for the Multiple Sclerosis Society, for which he was inducted into the MS Hall of Fame in 2015.  He serves on research review panels for various MS programs. He is a member and current chairman of the Montgomery County (Maryland) Commission on People with Disabilities, Vice-Chair of the Alliance of Maryland Disability Commissions and Committees, and Commissioner of the Maryland State Disability Commission.

Phil Posner

Phil Posner is a patient with MS and has a Ph.D. in Medical Sciences. He has been involved in research and teaching at S.U.N.Y. U.C.S.F., Stanford, University of Florida Health Center, Oxford University,Auburn University (Head Dept. of Anatomy, Physiology and Pharmacology), Founding Faculty of F.S.U. College of Medicine . He is currently, Biomedical Science Advisor with ORISE/ORAU. He has previous experience reviewing research proposals in Cardiovascular Disease, Developmental Disorders, Cell Biology, Neuroscience, and Autoimmune Diseases for various funding agencies (NIH, NSF, American Heart Association) He has also reviewed scientific manuscripts for various peer reviewed journals. He has served as a patient representative (SGE) for the FDA (Neural and Cardiovascular Drugs and Devices), D.O.D. (CDMRP) and P.C.O.R.I. He also volunteers with the National Capitol MS Society through various programs. He is currently a member of the patient steering committee for 3 PCORI funded projects. He is currently a PCORI Ambassador and serve on the Patient Engagement Advisory Panel (PEAP) and SCCT. He has also served as Vice Chair of WMATA’s Accessibility Advisory Committee for the past 6 years. He has been active with the Capitol MS Society and have participated in the friendly caller program. He is a member of the Virginia GRAC and has participated in Richmond and Capitol Hill lobbying for the past 5 years. He has been elected to the MS Society Advocacy Hall of Fame and awarded the Richard W. Heddinger Award for activity in improving paratransit by the WMATA AAC.

Hollie Schmidt, M.S., Chair, Vice President of Scientific Operations, Accelerated Cure Project for MS

Hollie Schmidt is the Vice President of Scientific Operations at Accelerated Cure Project for MS. Her role includes top-level direction of ACP's Sample and Data Repository, which provides highly-characterized serum, plasma, DNA, RNA, and cells from people with demyelinating diseases and controls to scientists worldwide. She has guided the formation of the ACP Clinical Research Network (CRN) and is working with CRN investigators to design OPT-UP, a study aimed at optimizing treatment response and understanding progression in MS. She also guides the content and community-building elements of the MS Discovery Forum, an interactive community and comprehensive information resource for MS researchers. Before joining ACP, her endeavors included co-founding the management consulting firm Lifting Mind as well as co-founding two software companies, Midnight Networks and NorthStar Internetworking. She has an MS in management, as well as a BS and MS in materials science and engineering, all from the Massachusetts Institute of Technology.

Amanda Windhof, PhD, MS Lifestyle & Nutrition Advocate

Amanda Windhof is an international Biochemist with 10+ years of research and data analysis experience in the US and Germany.

Since her own MS diagnosis, Amanda has committed to empower MS patients to overcome the disease through lifestyle choices and anti-inflammatory nutrition advocacy.

She firmly believes in the power of the individual to impact disease progression through a holistic approach beyond medication.

Amanda is a Project Manager and Scientific Information Analyst at CAS, a division of the American Chemical Society.

Previously to relocating back to her family in Central Ohio (Go Bucks!), Amanda worked for 5 years at the renowned Max Planck Institute of Biochemistry in Germany.

Amanda holds a Bachelor of Science degree in Biology from Wittenberg University and a Master of Science degree from the University of Canterbury in New Zealand where she graduated with “First Class Honors”.

She holds PhD in Biochemistry (Magna Cum Laude) from the prestigious Ludwig-Maximilian University of Munich, Germany.