PRESENTERS

Laura Adams

Laura Adams, Senior Advisor, National Academy of Medicine (NAM), provides strategic counsel and leadership for the Science & Technology portfolio of the NAM Leadership Consortium. She leads NAM’s healthcare Artificial Intelligence Code of Conduct (AICC) national initiative and chairs the Global Opportunities Group for the Regulatory Science and Innovation Network in AI and Digital Health in the UK. Her expertise is in digital health, improvement science, and human-centered care.

Suma Babu

Suma Babu is an ALS neurologist and serves as an Assistant Professor of Neurology at Harvard Medical School, Co-Director of the Neurological Clinical Research Institute at Massachusetts General Hospital (MGH) and as a core faculty at the Sean M. Healey and AMG Center for ALS at MGH. She has a special interest in developing disease modifying treatments and clinical trial biomarker readouts for people with motor neuron diseases. Her clinical research work is primarily aimed at improving ALS patient care and survival outcomes. Dr. Babu is one of the multiple principal investigators leading the Access for All in ALS (ALL ALS) East Clinical Coordinating Center awarded by NINDS to MGH, also funded under the ACT for ALS.

Amir Bahmani

Amir Bahmani is the Director of the Stanford Deep Data Research Center, specializing in large-scale parallel computing and cloud computing applications, with a focus on medical applications, data privacy, and pervasive computing. A passionate advocate for interdisciplinary collaboration, Amir seeks to bridge the gap between computer scientists and medical professionals. His work aims to enhance research capabilities and education in bioinformatics through cutting-edge technology.

Amy Bany Adams

Dr. Amy Bany Adams currently serves as the Acting Deputy Director for NINDS. In addition to this role, she also continues to serve as NINDS Deputy Director of Scientific Management and Operations, where she leads strategic efforts that optimize operational support for the Institute’s scientific priorities. Dr. Adams received her PhD from Yale University and her B.S at MIT, and came to NIH as a AAAS Science and Technology Policy Fellow almost 20 years ago, where she has played leadership roles in science policy, science communications, and scientific operations and coordination of trans-NIH initiatives.

Richard Benson

Moderator

Dr. Richard Benson is the Director of the “Office of Global Health and Health Disparities” (OGHHD) at the National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS). Dr. Benson has worked in academia, the public, and the private sectors. Outside of his work at the NIH, he is an associate editor for DEI for the journal Neurology. His areas of interest and expertise include neurological health disparities/inequities, minority, community and global health.

Adam Berger

Moderator

Adam C. Berger, PhD is the Director of the Division of Clinical and Healthcare Research Policy in the Office of Science Policy at the National Institutes of Health (NIH). Dr. Berger oversees a wide range of policy issues related to clinical trials, biospecimen research, privacy, bioethics and human subjects protections, and translation of biomedical discoveries. He oversaw the development and implementation of the Precision Medicine Initiative (PMI), a transformational medical initiative to accelerate the development of disease treatments by taking into account patients’ individual characteristics, across all operating and staff divisions of the Department of Health and Human Services (HHS).

Kyle Brothers

Kyle Brothers, MD, PhD serves as Chief Scientific Officer for Norton Children’s Research Institute in Louisville, Kentucky. He is a Professor of Pediatrics and the Endowed Chair for Pediatric Clinical and Translational Research at the University of Louisville, where he directs the Division of Pediatric Clinical and Translational Research. Dr. Brothers is a pediatrician and bioethicist who conducts research on ethical issues in the translation of genomic technologies to clinical practice. He is a practicing primary care pediatrician and serves as a clinical ethics consultant at Norton Children’s Hospital in Louisville, Kentucky.

Ian Burkhart

Ian is a C5 complete tetraplegic from a diving accident in 2010. He is the founder of the BCI Pioneers Coalition and President of the North American Spinal Cord Injury Consortium President. After participating in a few clinical trials, he understood the need for engagement of individuals with lived experience from the start. Ian was the first person in the world to restore movement to a paralyzed limb using a BCI neuroprosthetic. He is also the Executive Director of the Ian Burkhart Foundation, which raises funds for medical equipment for other individuals living with paralysis. His research focuses on amplifying the lived experience of people with disabilities.

Michelle Campbell

Dr. Michelle Campbell is the Associate Director for Stakeholder Engagement and Clinical Outcomes in the Office of Neuroscience, Office of New Drugs (OND) in FDA’s Center for Drug Evaluation and Research. Dr. Campbell joined the FDA in 2014 and previously was a reviewer on the Clinical Outcome Assessments (COA) Staff and Scientific Coordinator of the COA Qualification Program in OND. Dr. Campbell’s focus is in patient-focused drug development and the use of patient experience data in the regulatory setting.

Ishita Das

Ishita Das, PhD, is an associate director at the Milken Institute Science Philanthropy Accelerator for Research and Collaboration (SPARC) where she leads cross-disciplinary projects. Her expertise lies within biomedical research, science and health policy, stakeholder engagement, workforce diversity, strategic planning, and project management. At the Institute she uses this knowledge to guide philanthropic investments to have a meaningful impact on science and health. Previously, Das was a project manager at Ripple Effect, a management consulting firm, where she led cross-functional teams to implement various science and health initiatives for federal agencies, nonprofits, and public-private partnerships.

Meri-Margaret Deoudes

Meri-Margaret Deoudes serves as the chief senior advisor to the President & CEO of the Parkinson’s Foundation. She ensures the alignment of mission priorities and programs with the organization’s strategic plan. Collaborating with staff, she deploys the Foundation’s resources to drive efficiencies and impact for the Parkinson’s Community. She has an extensive background in holistic corporate alliances, special events, and employee engagement programs for prominent health-focused nonprofits, including March of Dimes and the Leukemia & Lymphoma Society.

Jennifer French

Moderator

Jennifer French is the Founder and Executive Director of Neurotech Network, a nonprofit organization that focuses on education and advocacy of neurotechnologies. As a result of a snowboarding accident, Jennifer French lives with tetraplegia due to a spinal cord injury. She is an early user of an experimental implanted neural prosthesis for paralysis and is the Past-President and Founding member of the North American SCI Consortium. French is the current Chair of the CDMRP Spinal Cord Injury Research Program programmatic committee. She serves on the board of the Independent Living Center serving Pinellas & Pasco counties. She is also the Accessibility Advisor for Greenfields Outdoor Fitness bringing accessible gyms to local municipalities.

Walter Koroshetz

Dr. Koroshetz serves as Director of the National Institute of Neurological Disorders and Stroke. He joined NINDS in 2007 as Deputy Director and has held leadership roles in multiple programs including co-leading the NIH’s BRAIN Initiative, the NIH RECOVER Initiative on Post Acute Sequelae of COVID-19, pain research in the Helping to End Addiction Long Term (HEAL) Initiative, the Accelerated Medicine Partnerships for Parkinsons and the Public Private Partnership in ALS. Before joining NINDS, Dr. Koroshetz served as Vice Chair of Neurology, Director of stroke and neurointensive care services at Massachusetts General Hospital (MGH) and neurologist in the MGH Huntington’s Disease Clinic. He was a professor of Neurology at Harvard Medical School (HMS) and led neurology resident training at MGH between 1990 and 2007.

Lauren Massimo

Lauren Massimo is a graduate of the PhD program at the University of Pennsylvania. She is an Associate Professor in the School of Nursing at the University of Pennsylvania and Co-Director of the Penn Frontotemporal Degeneration Center, where she also leads Outreach efforts. Dr. Massimo’s research focuses on identifying the cognitive and neural basis for behavioral symptoms associated with neurodegenerative disease. As a nurse practitioner in cognitive neurology, she has enjoyed the opportunity to work with and support many patients with neurodegenerative disease and their families. Dr. Massimo is currently funded by the National Institute on Aging for her work seeking to understand neural mechanisms underlying apathy in Frontotemporal degeneration.

Rakale Quarells

Dr. Rakale Collins Quarells is a Behavioral Scientist and a Professor of Community Health and Preventive Medicine at the Morehouse School of Medicine (MSM). She also has an adjunct Professor appointment in the Department of Behavioral, Social, and Health Education Sciences in the Rollins School of Public Health at Emory University. Dr. Quarells joined MSM in 2000 following the completion of a two-year Postdoctoral Fellowship in Chronic Disease Epidemiology and Prevention at the Stanford Prevention Research Center in the Stanford University School of Medicine. Dr. Quarells received her Ph.D. and M.S. degrees in personality psychology from Howard University in Washington, D.C. Her primary research focuses on utilizing community engagement to enhance the prevention and self-management of chronic diseases (including cardiovascular diseases, type 2 diabetes, and epilepsy) among Black and Latinx communities. She has received both private and federal funding to support her research and community engagement activities.

Maya Rockeymore Cummings

Dr. Maya Rockeymoore Cummings is President and CEO of Global Policy Solutions, a consulting firm dedicated to driving society toward inclusion. In this role, Maya serves as a strategic advisor to The Light Collective, an organization on a mission to represent collective rights, interests, and voices of patient communities in healthcare technology. She is the co-author of the Action Strategies for Healthy Communities Toolkit and as a member of the National Academy of Social Insurance, Maya contributed to the development of its seminal study panel report, “Strengthening Medicare’s Role in Reducing Racial and Ethnic Health Disparities.”

Katie Sale

Katie Sale is the Executive Director of the American Brain Coalition (ABC), a nonprofit organization seeking to advance the understanding of brain functions to reduce the burden and stigma of brain diseases and conditions in order to improve lives of impacted people by convening organizations, leading education and advocacy, and engaging the public, its representatives, and other stakeholders. Ms. Sale services the needs of the ABC’s membership comprised of patients, families, neuroscientists, clinicians, industry, and government agencies. As Executive Director of the ABC, Ms. Sale serves as an Executive Committee member on the Friends of the National Institute of Mental Health (NIMH), a member of the BRAIN Initiative Alliance, and an ex officio member of The National Academies of Sciences, Engineering, and Medicine’s Forum on Neuroscience and Nervous System Disorders.

Astrid
Suchy-Dicey

Astrid M. Suchy-Dicey, PhD, Associate Professor, Director Clinical Neurosciences, and Principal Investigator of the Brain Aging Study at HMRI is an epidemiologist dedicated to unraveling risk and etiology in neurodegenerative disease. Her research focuses on the methodology for collecting, analyzing, and interpreting imaging, plasma biomarkers, cognitive testing, and social determinants pertaining to vascular and Alzheimer’s diseases, with a particular interest in health disparities. She leads multiple independent, NIH-funded research aimed at understanding risk and resilience factors in brain aging in American Indians, Alaska Natives, and other marginalized populations. She has a background in molecular pathology, and advanced certification in machine learning. Her research interests include: epidemiology of chronic diseases related to aging; complex systems of balance in human physiology; health disparities in U.S. minority populations.

Mindy Uhrlaub

Mindy Uhrlaub is a founding member of End the Legacy, a nonprofit dedicated to the needs of genetic ALS/FTD patients. She is a Peer Mentor for pre-symptomatic C9orf72 patients at I Am ALS. Mindy is a participant in sixteen ongoing longitudinal studies for C9orf72 ALS. She also served as a patient advisor to the NIH to determine the viability for expanded access to NurOwn, an ALS treatment. She was a member of the National Academy of Science, Engineering, and Medicine’s committee to make ALS a livable disease. Her essays on Familial ALS are featured on the I Am ALS website. For work on Mindy’s forthcoming ALS memoir, A War of Nerves, she has been awarded residencies at Millay Arts, The Hambidge Center, Joyce Maynard’s Write by The Lake, Litcamp, and Ragdale for the Arts.

Christin Veasley

Since developing chronic pain after a near-fatal accident in her teens, Christin has worked to accelerate pain research and the translation of findings into meaningful change for people with pain. As cofounder of the Chronic Pain Research Alliance, she has been a fervent advocate at the Congressional and federal agency levels to bring about awareness of chronic pain’s impact, the urgent need for an increased research investment to address this crisis and the value of including patients as partners in science. Her experiences led her to obtain a science degree, time conducting neuroscience research and to the pain research advocacy community. She’s served in advisory positions for pain initiatives within federal agencies; academic studies; and collaborative alliances and public-private partnerships. Christin co-chairs the NIH ENGAGE Working Group, charged with developing an agency-wide vision and framework for the inclusion of patients and the public as partners in NIH clinical research.

Edgar Vega

Edgar Vega is a dedicated Associate Director of Patient Advocacy at uniQure. With a profound commitment to the rare disease community, he has accumulated 17 years of invaluable experience in the field. Before his current role, Edgar spent 7 years immersed in the world of hemophilia, gaining deep insights into the intricacies of rare diseases. His current focus is on Huntington’s Disease & ALS, where he hopes to make a significant impact. Edgar’s passion lies in educating communities about the remarkable realms of science, biotechnology, and gene therapy, underscoring his dedication to enhancing awareness and understanding in these cutting-edge fields.

Shilpa Venkatachalam

Shilpa Venkatachalam, PhD, MPH, is the Chief Patient-Centered Research and Ethical Oversight Officer at the Global Healthy Living Foundation (GHLF) and Principal Investigator of PatientSpot, a patient-powered research registry, and omni disease platform for people living with chronic diseases She leads and manages several research projects variously funded including one currently supported by the Centers for Disease Control and Prevention (CDC), titled “Building Capacity for Chronic Disease Education and Awareness” and a PCORI Eugene Washington Dissemination award titled, “Building the Capacity of Patient Advocacy Organizations to Disseminate PCOR to Patient Communities on Chronic Pain”. She also serves as an advisor on several projects including one on “Improving COVID-19 Vaccine Uptake Among Racial and Ethnic Minority Groups with Rheumatic Diseases” led by the University of Alabama at Birmingham and PANDA-MSD: Predictive Analytics via Networked Distributed Algorithms for Multi-System Inflammatory Diseases, led by Pennsylvania University. She holds degrees from Mumbai, India, the University of Durham, and the University of Nottingham, in the United Kingdom and has worked as an academic in the UK, US, and the West Indies. She earned an Advanced Master’s in Global Health from New York University (NYU) and received the Paul Ambrose Scholars Program fellowship. She was among 25 chosen by The Young Persons Chronic Disease Network in collaboration with American Cancer Society and the Harvard Global Equity Center for The Global Cancer Advocacy Training. Shilpa has been a panelist for the Ambassador’s Club at the UN and served on the Science and Policy Advisory Council for NPAC. Living with inflammatory arthritis, she contributed to the 2021 ACR guidelines for RA and the 2022 ACR guidelines for vaccinations in rheumatic diseases.

Louise Vetter

Louise Vetter recently completed her 15 year career as President & CEO of the Huntington’s Disease Society of America (HDSA), the largest public non-profit devoted to the fight against Huntington’s disease (HD). There, she led the expansion of the Society’s impact with new programs to strengthen the access to care for the HD community, remove barriers to support and clinical resources, improve physician understanding of HD, and support scientific innovation to bring new treatments to HD families. Currently, Ms. Vetter is the President & CEO of the Lupus Foundation of America, a Board Member of the National Health Council, and Emeritus Board Member of the American Brain Coalition.

Heidi Wallis

Heidi is the Executive Director of the Association for Creatine Deficiencies and parent of four children, two of which have GAMT Deficiency, a rare cerebral creatine deficiency syndrome with severe impacts if not diagnosed and treated from birth. Heidi and team recently completed a two year project to establish, through patient and expert consensus, a Core Outcome Set (COS) for GAMT and CTD clinical trials. Her team is preparing to begin a second project this fall to establish “Considerations for the Selection of Outcome Measurement Tools” as a companion to the COS. Prior to working for ACD she was a grant analyst and project manager in the Utah Public Health Newborn Screening program. Heidi’s vision is that one day all creatine deficiencies will be diagnosed at birth, through routine newborn screening, and will be treated with an effective and appropriate treatment before the onset of symptoms.

Karriem Watson

Karriem S. Watson, DHSc, MS, MPH is the Chief Engagement Officer for the National Institutes of Health’s All of Us Research Program. He leads the All of Us Research Programs efforts to foster relationships with participants, communities, researchers and providers across the United States and territories through equitable engagement to help build one of the largest and most diverse health datasets of its kind to advance precision medicine research. Prior to joining the NIH, Dr. Watson spent over 15 years conducting cancer disparities research. His work spans across community engaged research, CBPR, and implementation and dissemination science including engaging community members as Citizen Scientists to improve diversity, equity, and inclusion in clinical trials. Dr. Watson also served as a health care administrator overseeing community-based research and serving as the Associate Executive Director for a network of Federally Qualified Health Centers (FQHCs).

John Wilbanks

John Wilbanks works at the intersection of data, software, policy, and science. He serves as a Senior Advisor to the Milken Institute’s FasterCures and as a Senior Fellow at the Datasphere Initiative. John has led teams at the Broad Institute, Biogen, and Sage Bionetworks that build data platforms, run complex clinical research with technology, and develop innovative approaches to data governance. Sage’s informed consent toolkit has been integrated into Apple’s ResearchKit, Android ResearchStack, and has supported the enrollment of hundreds of thousands of participants in mobile studies since its open source release in 2016. John’s technical background includes a stint in web standards at the W3C, as the founder of a knowledge graph bioinformatics company sold to Flagship, and as a researcher in pen-voice interfaces. His policy background includes leading open science at Creative Commons and as a Legislative Assistant in the US House of Representatives.