Caregivers Steering Committee
iConquerMS Caregivers is governed by and for the support partners and caregivers of people with MS. The Committee is led by volunteers, as well as Accelerated Cure Project Team members, MS advocates, scientists, and clinicians. The funding for iConquerMS and iConquerMS Caregivers is provided by the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010.
As CEO of Accelerated Cure Project, Sara Loud ensures delivery of research resources to scientists studying MS. Sara started her professional career in high tech and transitioned to the nonprofit world in 2005, joining ACP as the Director of the ACP Repository and assuming the role of CEO in 2019. Passionate about integrating the priorities, needs, and insights of people affected by MS into research, Sara combines a love of technology, business expertise, and social enterprise into her work, most recently focusing on the development of iConquerMSTM a people-powered research network for MS. Sara holds BS and MS degrees in electrical engineering from Northeastern University and an MBA from Babson College. Sara, her husband Jim, and their daughter Charlotte, split their time between Massachusetts and Maine.
Jon Strum is the host of the RealTalk MS podcast. Since its launch, over 300 episodes of RealTalk MS have been downloaded more than 2,000,000 times by listeners in over 100 countries around the world. Jon’s wife, Jeanne, lived with progressive MS for 23 years, and Jon’s story as Jeanne’s caregiver was featured in the documentary film, ”Seeing MS from the Inside Out.” As a member of the iConquerMS patient-powered research network, Jon leads a team of researchers, healthcare providers, and other caregivers in defining and piloting an online resource that provides proactive support and resources for MS caregivers.
Caregiver and Person diagnosed with MS
Dawnia Baynes is the founder and CEO of BrightSide 365. She was diagnosed with relapsing remitting multiple sclerosis in 2006 and is also a caregiver for her father who was diagnosed with primary progressive MS. Dawnia leads two self-help groups, one for people diagnosed with MS in their 20s to 40s, and another one for high school and college students.
Psychologist Specializing in MS
Meghan Beier, PhD is a psychologist specializing in multiple sclerosis (MS) at the Johns Hopkins University School of Medicine and founder of FindEmpathy.com - an online directory to help patients with medical conditions find specialized mental health providers. She has served a consultant and speaker for organizations such as: Can Do MS, the National MS Society, MS Association of America, MS Hope Day, American Academy of Neurology, and the MS Coalition. In the clinic, Dr. Beier assesses and treats cognitive and emotional symptoms in individuals living with MS. Dr. Beier’s research and publications in MS have focused on improving symptom assessment, using technology and tele-medicine, aging, depression, pain, diet, and physical activity. Finally, Dr. Beier was part of an expert panel that established national guidelines for assessing and treating cognition in people living with MS.
DAN & JENNIFER DINGMAN
Husband and wife, each diagnosed with MS, each a caregiver
Dan and Jennifer share their perspectives on life from a husband and wife who each have Multiple Sclerosis. He’s walking, she’s rolling. Together, they keep moving forward. The Michigan couple has worked to empower people through their relatable stories of love, empathy, and helping each other to stay in front of the obstacles that MS and life put in their way. Dan and Jennifer maintain a nationally recognized blog—ACoupleTakesOnMS.com—host a podcast under the same name, and regularly contribute to various MS publications and websites including MS Focus and MultipleSclerosis.net. In 2015, they were inducted into the NMSS Volunteer Hall of Fame for Advocacy.
BARBARA S. GEISSER
M.D., FAAN, FANA: MS Doctor
Dr. Giesser is an internationally recognized clinician who has specialized in the care of persons with multiple sclerosis (MS) since 1982. She is a multiple sclerosis neurologist at the Brain Health Center at Pacific Neuroscience Institute, located at Providence Saint John’s Health Center, Santa Monica, CA. Her clinical strategy combines state of the art diagnostics and therapeutics with integration of lifestyle practices to develop a comprehensive personalized treatment plan for each person diagnosed with MS. She serves on NMSS task forces to generate expert consensus recommendations for clinicians, specifically in the areas of diet and exercise.
PhD, ABPP-RP Rehab Psychologist
Abby is a board-certified rehabilitation psychologist and assistant professor in the Department of Physical Medicine and Rehabilitation at the Johns Hopkins University School of Medicine. Her research focuses on the role of modifiable health behaviors for MS symptom management and optimizing accessibility of assessment and intervention services for people with MS and their support partners. She directs a NMSS-funded postdoctoral fellowship in rehabilitation research. Clinically, her practice focuses on rehabilitation psychology services for persons diagnosed with MS and their families.
Care Spouse of Husband diagnosed with MS
Kathy Levasseur is an office manager at a wholesale sign company where she deals with all aspects of the business, from cost negotiations to customer service. Kathy’s husband Rich has been living with PPMS for over 20 years and she is his primary caregiver. She brings a unique perspective to the table, PPMS impacts the person who has the disease, and the caregiver Kathy isn’t afraid to offer her insight to help others navigate their MS journey.
MELISSA SARA SMITH
Care Partner of Husband diagnosed with MS
Melissa Sara Smith a professor of English at Ferris State University where she teaches composition and literature. She met her husband, Jon, eight years ago; he was diagnosed with MS exactly two years after they met, and they were married in 2019. Currently, Melissa is her husband's sole caregiver, and together they are navigating the complicated world of living with MS. They live with their two dogs, a pet tortoise, five snails, and one very angry fish.
Subject Matter Expert
MaryAnne is a subject matter expert and advocate in the Alzheimer’s Disease community, having supported multiple parents with dementia for 20+ years. She is EVP of Caregiver Experience at Livpact, building technology to make caregiving easier. She serves as Patient Research Partner and Ambassador for PCORI. She is also a Heal the Voices Impact Fund Grantee, seres on The Beryl Institute’s Global Patient and Family Advisory Board, and is a member of the Milken Institute’s Alliance to Improve Dementia Care.
Care Spouse of Husband diagnosed with MS
Lisa Stifelman has been designing digital voice experiences for more than 30 years, and is currently the voice architect for Microsoft’s Cortana assistant. Lisa and her husband Barry Arons met at MIT where they were early innovators of speech and audio technology, and later part of the founding team at the silicon valley start up, Tellme. As Barry’s MS progressed, Lisa took on another role, the most challenging yet rewarding, as Barry’s caregiver. Their love for each other and their daughter Jessie fueled them to live each day together to the fullest. Barry’s glass always half full of life, he emanated a joy with frequent laughter, tears of happiness, and a smile that they will never forget. Lisa is thrilled to be a part of this effort to help caregivers in honor of Barry’s memory and to share his love for life.
Hollie Schmidt is Vice President of Scientific Operations for Accelerated Cure Project for MS, co-chair of the Research Committee for iConquerMS, and leader of the MS Minority Research Engagement Partnership Network. Her MS advocacy work spans nearly 20 years, and her professional background also includes high-tech entrepreneurship and environmental public policy. She is active in MIT alumni efforts, serves on a Boston-area institutional review board, and is a board member for the International FOP Association. Hollie enjoys choral singing, competitive crossword solving, and going on adventures.
ROBERT MCBURNEY, PHD
Robert is the Chief Research Officer of the Accelerated Cure Project for Multiple Sclerosis (ACP), a non-profit organization accelerating multiple sclerosis research to improve the health, healthcare and quality of life of people affected by MS. He is also Research Lead of the iConquerMS People-Powered Research Network. Robert has over 50 years of biomedical research and management experience. He is a member of a number of professional societies and is currently Co-Leader of the Clinical Management Workgroup of the Global Patient-Reported Outcomes (PROs) in MS Initiative and a participant in the Critical Path Institute’s PRO Consortium MS Working Group.
Lindsey Miller Santiago
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!