iConquerMS™ Governance

The iConquerMS™ patient-centered governance structure includes a Governing Board and two committees. The majority of the board and committee members are people affected by MS.

Learn more about the governing board and committees and their 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.

Ann Marie Johnson

Ann Marie Johnson is a strong advocate in facilitating a pro-social outreach with over 25 rewarding years in public/human service. Ann Marie specializes in advocacy and community empowerment/inclusion of all, specifically individuals with disabilities. As a black woman living with a disability, the intersection of race, gender and disability creates issues that are evident in her daily life. As a result, her mission is to educate and promote a world inclusive of ALL people. Ann Marie’s passion toward that mission is evident in her personal and professional life. Ms. Johnson’s thesis in Maximizing Community Inclusion with Geriatric Individuals Diagnosed with a Developmental Disability earned her a Masters of Human Services from Lincoln University. As a result, of her tremendous commitment, dedication, and service to people with disabilities, she was inducted in the 2012 Volunteer of the Year Hall of Fame from the National MS Society and a MS Ambassador for the National MS Society. Although Ann Marie has no children and is an only child, she has raised and mentored her very successful younger cousin.

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.

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.

Sara Loud, Chief Executive Officer, Accelerated Cure Project for MS, Chair of Engagement Committee

Sara Loud is the Chief Executive Officer of The 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.

Robert McBurney, Chief Research Officer, 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.

Peter Riskind, M.D., PhD

Peter Riskind MD PhD is on the Board of Trustees of the ACP and iConquerMS, and has also had a long relationship with the NMSS and the CMSC.

Heather Siefers, Senior Manager, Clinical Supplies and Specimen Management, Aeras (Chair)

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.

Bari Talente, Executive Vice President of Advocacy NMSS

As the Executive Vice President of Advocacy at the National Multiple Sclerosis Society, Bari highlights the voices of people affected by MS to drive public policy change. Bari also leads the Society’s work to increase affordability and access to MS medications. In 2018, Bari was elected president of the MS Coalition and explores opportunities to leverage the collaborative efforts of the nine different organizations in the Coalition to improve the lives of people affected by MS.

iConquerMS™ Committees

Learn more about the governing board and committees and their 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.

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.

Natalie Blake, Director of Program Services for MS Focus: The Multiple Sclerosis Foundation

Natalie Blake is Director of Program Services for MS Focus: The Multiple Sclerosis Foundation. She manages all of the Foundation’s assistance programs and the staff responsible for the programs. Natalie is a former news reporter and public relations professional who became a patient advocate while raising two sons with chronic medical conditions. Natalie has dedicated her professional career to helping to make a difference in the lives of those who are living with chronic diseases. Prior to joining MS Focus, Natalie worked for other non-profit organizations including the Cystic Fibrosis Foundation and the Crohn’s and Colitis Foundation of America, where she managed special events and patient support programs. Natalie is an Ambassador for PCORI, the Patient Centered Outcome Research Institute and has served on several advisory committees for various health related organizations.

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.

Marie LeGrand, Director of Education, Healthcare Relations & Grant Management for the MSAA

Marie is the Director of Education, Healthcare Relations & Grant Management for the MSAA. She is responsible for planning and implementing the educational programming for 12 states within the Midwest, stretching from West Virginia to North Dakota as well as overseeing grants for MSAA. She lives within the Chicago land region and enjoys being with her family and living life to the fullest.

Sara Loud, Chief Executive Officer, Accelerated Cure Project for MS, Chair of Engagement Committee

Sara Loud is the Chief Executive Officer of The 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.

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:

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.

Marguerite Casillas

Marguerite Casillas is a former Senior Vice President of Corporate Communications at Wells Fargo who has been living with MS since 2003. After retiring in 2022, she has focused on high-level volunteer advocacy and activism work in Washington D.C. and California for the National MS Society on issues that impact the lives of people living with MS and other chronic illnesses, and providing input and editorial guidance on communications for Society staff. As a member of the Society’s California Government Relations Advisory Committee, she meets regularly with Society staff and other activists to review pending legislation and determine prioritization of issues for the broader community of MS Society activists in California. She is also pursuing a Master’s Degree in Disability Studies from City University of New York (CUNY).

Yolanda M. Hardy, Pharm. D.

Yolanda M. Hardy, Pharm.D., is the Associate Dean of Academic Affairs, Assessment and Accreditation and Associate Professor at Palm Beach Atlantic University Lloyd L. Gregory School of Pharmacy. Prior to her administrative roles, she served on faculty at Chicago State University College of Pharmacy and Northeastern University School of Pharmacy in Boston, Massachusetts, where she managed clinical pharmacy services with a focus on providing ambulatory care services in diverse and underserved communities. She has experience in establishing clinical pharmacy services in related to anticoagulation and chronic disease state management. Dr. Hardy’s research interests include assessment of student learning, examining the role of pharmacists in reducing health disparities, and cultural competency.  

Dr. Hardy holds a Bachelor of Science in Pharmacy degree from the University of Toledo in Toledo, Ohio (1999). She earned a Doctor of Pharmacy degree at The Ohio State University in Columbus, Ohio (2001). Following this, she completed a Pharmacy Practice Residency in Community Care with The Ohio State University School of Pharmacy and the Columbus Neighborhood Health Centers, Inc. in Columbus Ohio. 

Jeanine M. Palumbo, PMP, CPIM, CSCP

Jeanine M. Palumbo graduated from Washington University in St. Louis with a BA in Psychology.  She continued her professional development earning Project Management Professional (PMP), Certified in Production and Inventory Management (CPIM), and Certified Supply Chain Professional (CSCP) designations.  Her biotechnology career included managing MS clinical trials leading her to become a volunteer and Trustee with the National Multiple Sclerosis Society.  She enjoys crocheting and is an avid volunteer with WaterFire.

Robert Poh

Rob is a retired science and technology professional with diverse experience comprising responsibilities ranging from system administration through executive management. He is also a person with multiple sclerosis.

A United States Navy veteran, Rob achieved success in business management on Wall Street and in broadcasting before becoming interested in behavioral science. With a bachelor’s degree in psychology and biology from Towson University, Rob next studied behavioral neuroendocrinology at Emory University. Mentored by Kim Wallen, Rob learned to integrate interests in science, computing, and service.

With a consistent track record of increasing responsibility in Emory University’s IT Division, Rob attracted notice from Morgan Stanley. Recruited to manage the Distributed Systems Integration team with global reach (New York, London, Tokyo, and Hong Kong), Rob honed his executive management skills for two years before returning to academic computing. Growing again in responsibility, he filled several roles at Georgia State University, beginning as the IT Director for the Center for Behavioral Neuroscience, and becoming IT Director of the Neuroscience Institute. Additionally, Rob served as Senior Technologist for the VP for Research. In that role, he consulted on projects and operations in the University Research Services and Administration, including supervision of departmental IT managers.

Diagnosed with Primary Progressive Multiple Sclerosis in 2010, Rob continued to work until 2018. Since then, he has remained active in Georgia State University life. With significant help from the Shepherd Center, Rob has countered the advancing disability brought on by PPMS by a regimen of targeted interventions including physical therapy, occupational therapy, speech therapy, and personal training customized to accommodate and alleviate MS symptoms.

Cristina Román, Ph.D

Dr. Cristina A.F. Román is a Research Scientist at Kessler Foundation and Assistant Research Professor at Rutgers New Jersey Medical School. She completed her bachelor’s degree at the University of California, Los Angeles. She received her Ph.D. in Clinical Psychology (focus: Neuropsychology) from The Pennsylvania State University in 2019 after completing a pre-doctoral internship at the Charleston Consortium. Prior to her transitioning to her role as a Research Scientist, she completed two separate postdoctoral fellowships- a clinical fellowship in Neuropsychology at Brown Medical School and a research fellowship sponsored by the National Multiple Sclerosis Society (NMSS) at Kessler Foundation.

Her research focuses on the impact of cardiovascular risk factors and systemic and psychosocial influences, namely healthcare-related social determinants of health (e.g., barriers to healthcare access, quality of healthcare, health literacy) and political determinants of health, on cognition, brain structure, and accelerated aging in people with multiple sclerosis (MS) who identify from historically minoritized groups. She is dedicated to increasing the inclusion of historically underrepresented groups in training and research to improve generalizability of research results and increase access to empirically driven culturally informed care.

Dr. Román’s dedication to social justice and advocacy guides all aspects of her clinical, research, mentoring, and community service endeavors. She is an active member of the Hispanic Neuropsychological Society, iConquerMS’s Minority Research Engagement Partnership Network, National Multiple Sclerosis Society’s Hispanic/Latinx Collaborative, International Neuropsychological Society’s (INS) Cultural Scientific Interest Group, National Academy of Neuropsychology (NAN), and the Organization for Human Brain Mapping. Dr. Román is the recipient of NIH’s Outstanding Scholars in Neuroscience Program Award, and she has received research funding from the National Institutes of Health, National Academy of Neuropsychology, American Psychological Association, and private foundations.

Hollie Schmidt, M.S., Co-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 Multiple Sclerosis. She co-chairs the Research Committee of iConquerMS, a virtual research network for MS established to perform and support participant-centered research in MS. In this role she works to promote the engagement of people affected by MS throughout the research process and to develop research collaborations on topics of interest to people with MS. She founded and leads the MS Minority Research Engagement Partnership Network, a multi-stakeholder initiative aimed at promoting racial and ethnic diversity in MS research studies. Before joining ACP, her endeavors included co-founding a management consulting firm as well as co-founding two software companies. Hollie has an MS in management, as well as a BS and MS in materials science and engineering, all from the Massachusetts Institute of Technology. She serves on the Institutional Review Board of Beth Israel Deaconess Medical Center, is a board member for the International FOP Association, and is Secretary for the Multiple Sclerosis Coalition.

Kara Skorupa, Co-Chair

Kara Skorupa is an attorney specializing in health law, both in the private and public sectors. Kara has always been an advocate for the disabled community, but after her own diagnosis with multiple sclerosis, she resolved to do even more. Taking pro bono cases, writing articles, and serving as a patient advocate are some of the ways in which she volunteers, in addition to maintaining a private law practice. She earned her BA in English Literature and her law degree from the University of Florida before continuing on to DePaul University where she was awarded an LLM in Health Law. Kara lives in South Florida, and enjoys traveling and spending time with her family and dogs.