Upcoming & Past Events

Panel Discussion about the State of Alzheimer's & Down Syndrome Research - November 12, 2024

This virtual forum featured Dr. Michael Rafii, Professor of Neurology and leader of the Alzheimer's Clinical Trials Consortium - Down syndrome; Hampus Hillerstrom, President and CEO of LuMind IDSC; Lissa Pestolesi, Parent advocate and past president of the Down Syndrome Association of Orange County; and Derrin From, an individual with Down syndrome who has participated in several studies. The panelists discussed ongoing research opportunities and challenges with equity and inclusion. They also provided practical tips for families and researchers about how they can advance research about Alzheimer’s Disease.

Click here to watch the recording.

Click here to access resources from the presentation.

Panel Discussion about Down Syndrome and Alzheimer's Disease - September 26, 2024

This virtual forum featured Dr. Brian Chicoine, Medical Director of the Advocate Medical Group Adult Down Syndrome Center; Dr. Seth Keller, Neurologist and Co-President of the NTG; and Amy Kolb-Tucker, Special Olympics Area Director and parent to 43-year-old Katy who has Down syndrome and has been diagnosed with Alzheimer’s. They discussed the barriers that adults with Down syndrome may face in Alzheimer’s diagnosis/treatment, such as lack of access to knowledgeable healthcare providers. They also provided practical tips and opportunities for families and healthcare providers to navigate and begin to address those barriers.

This virtual forum was hosted by the Stanford University School of Medicine, the Stanford Alzheimer's Disease Research Center (ADRC), and the National Task Group for Intellectual Disabilities and Dementia Practices. 

Read a plain language summary here.

Click here to watch the recording.

Click here to access resources from the presentation.

Karla Ausderau - August 23, 2023

Dr. Karla Ausderau, PhD, OTR, FOATA, is an Associate Professor, in the Kinesiology Department, Occupational Therapy Program at the University of Wisconsin and a Waisman Center Investigator. Dr. Ausderau amplifies the voices of people with intellectual and developmental disabilities and their carepartners in identifying health research priorities and developing resources for investigators and research teams to facilitate the participation of people with intellectual and developmental disabilities as research participants and team members. She and her team have also developed Research Engagement and Advocacy for Diverse Individuals (READI), a health research curriculum to build capacity to facilitate meaningful engagement in research practices for people with intellectual and developmental disabilities.

Click here to read the plain language summary. 

Click here to watch the recording. 

Donnie Denome - July 26, 2023

Donnie TC Denome, MPH (pronouns: they/them) is a multiply disabled autistic self-advocate, AAC user, writer, and graphic designer. Donnie currently works as the Autistic Self Advocacy Network’s Inclusive Publications and Research Coordinator, where they create, edit, and curate many of ASAN’s Easy Read and plain language resources. Donnie holds a Master’s of Public Health degree from Claremont Graduate University with a focus in health education for people with intellectual, communication, and developmental disabilities.

Click here to read a plain language summary.

Click here to view slides from the virtual forum.

Click here to watch the recording.

Irene Tuffrey-Wijne - May 24, 2023

Dr. Irene Tuffrey-Wijne is qualified as a nurse in Amsterdam and moved to London in 1985, where she lived and worked in the L'Arche Community with people with intellectual disabilities for eight years. She then worked as a hospice nurse for eight years before moving into academia in 2001. She worked at St George's University of London and moved to the Joint Faculty with Kingston University in 2012. Dr. Tuffrey-Wijne has led a program of research focusing on intellectual disability, cancer and palliative care, with a particular interest in communication of bad news and in service development. Inclusion of people with intellectual disabilities as coresearchers is a key part of her work. She was given the world's first chair inIntellectual Disability & Palliative Care in 2018.

Click here to read a plain language summary. 

Click here to watch the recording. 

Tyler G. James & Michael M. McKee - May 10, 2023

Dr. Tyler G. James is a Research Fellow in the Department of Family Medicine, jointly appointed in the Center for Disability Health and Wellness and Michigan Mixed Methods Program. His research focuses on questions of health equity and healthcare access, utilization, and delivery among people with disabilities, particularly among people who are deaf/hard-of-hearing and DeafBlind; these interests include interventions within the electronic health record to improve the quality of care for patients with disabilities. 

Dr. Michael M. McKee is a family physician with clinical and research expertise in disability health. As a physician with a hearing loss, he is especially interested in advocating for the rights of Deaf and hard of hearing patients to obtain equitable health care including accessible communication. His research focus includes health disparities for individuals with various disabilities, health information accessibility, health literacy, and telemedicine applications. He is also interested in the application of eye trackers and mixed methodologies to study how individuals acquire health information through visual and incidental learning opportunities.

William Mobley - March 22, 2023

Dr. Mobley is Distinguished Professor of Neurosciences at UC San Diego. He is a neurologist and neuroscientist whose research focus in the biology of Alzheimer disease in Down syndrome. His laboratory carries out studies in the brains of animal models of Down syndrome and in the Down syndrome brain. To prepare for future treatment trials to prevent Alzheimer disease in Down syndrome he participated in creating the Down Syndrome Clinical Trials Network and serves as project director of the LIFE-DSR Observational Clinical trial for Adults with Down syndrome.

Click here to read a plain language summary. 

Scott Landes - February 22, 2023

Dr. Scott Landes is an associate professor of sociology, O'Hanley Faculty Scholar, and faculty associate in the Aging Studies Institute at Syracuse University. He received a Ph.D. in sociology from the University of Florida in 2014. Informed by his interest in medical sociology, aging and the life course, and disability theory, the majority of his research focuses on health and mortality trends across the life course for those with intellectual and developmental disability, and for military veterans. His other primary research focus addresses the intersections of intellectual disability and social theory. 

Click here to read a plain language summary.

Maya Sabatello - December 14, 2022

Maya Sabatello, LLB, PhD is an Associate Professor of Medical Sciences and Co-Director of the Precision Medicine: Ethics, Politics, and Culture Project at Columbia University. She is a former litigator with trans-disciplinary background and extensive experience in national and international policymaking relating to human and disability rights. Dr. Sabatello studies how biomedical technologies, genomic information, and Big Data impact social structures, marginalized communities, and individual rights and health outcomes. Her research program focuses on the ramifications of genetic data in non-clinical settings (e.g., schools) for social, disability and racial justice; the psychosocial impact of genomic data on adolescents and families; and issues of trust, consent, and inclusion of people with disabilities in precision medicine research.

Click here to read a plain language summary.

Kevin Biese - October 26, 2022

Dr. Kevin Biese serves as an Associate Professor of Emergency Medicine (EM) and Internal Medicine, Vice-Chair of Academic Affairs, and Director of the Division of Geriatrics Emergency Medicine at the University of North Carolina (UNC) at Chapel Hill School of Medicine as well as a Vice-Chair of the Board of the UNC Health Care Senior Alliance. He also serves as a consultant with West Health, a San Diego based philanthropic organization dedicated to improving care for older adults. With the support of the John A. Hartford and West Health Foundations, he is the co-leader alongside Dr. Ula Hwang of the national Geriatric Emergency Department Collaborative, serving as PI of the implementation arm. He is grateful to chair the first Board of Governors for the ACEP Geriatric Emergency Department Accreditation Program, which has now improved the quality of care in over 370 emergency departments in 40 states and 4 countries.

Click here to read a plain language summary.

Panel Discussion: Mental Health & IDD During COVID-19 - September 28, 2022

This IDD-TRANSFORM virtual forum discusses the mental health needs and challenges of adults with intellectual and developmental disabilities (IDD) during the pandemic. This forum was a panel discussion moderated by Dr. Holly Tabor, and included the following panelists:

  • Paul Brooks Jr., Special Olympics Nevada college student, athlete leader, and health messenger.
  • Evan Milburn, Special Olympics Athlete leader and intern.
  • Celeste Brooks, mother of Paul Brooks and advocate for adults with IDD.
  • Amanda Young, Director of Health & Wellness for Special Olympics Northern California.

Click here to read a plain language summary. 

Micaela Connery - August 24, 2022

Micaela Connery is Co-Founder and CEO of The Kelsey. The Kelsey pioneers disability-forward housing solutions that open doors to more affordable homes and opportunities for everyone. We develop affordable, accessible, inclusive housing communities designed to scale and lead organizing and advocacy to create market conditions so inclusive housing becomes the norm. What started with Kelsey, an advocate for access and community, has become a movement towards an inclusive housing future led together by people with and without disabilities. 

Click here to read a plain language summary. 

Lauren Clarke - July 27, 2022

Lauren Clarke is a 3rd-year medical student at Stanford University, where she is pursuing a joint MD/MA in Education. Lauren’s research focus is on improving physician competency in caring for patients with intellectual disabilities through improving the accessibility and quality of clinical training in the field of developmental medicine. Lauren serves as the Medical School Education Chair of the American Academy of Developmental Medicine and Dentistry (AADMD) Student/Resident Committee, organizes a chapter of the AADMD at Stanford, and serves on the Young Professionals Advisory Committee of Special Olympics Northern California. Lauren is planning on pursuing physiatry and hopes to have disability advocacy, medical education, and mentorship play a large role in her future career.

Click here to read a plain language summary. 

 

Justin Steinberg - May 12, 2022

Justin Steinberg is a research assistant at the Stanford Center for Biomedical Ethics. He has a master's degree in special education from San Francisco State University and is interested in disability advocacy, especially in the area of healthcare. He is on the autism spectrum and has a visual impairment and is an athlete leader for Special Olympics Northern California. He is also very passionate about research and research ethics involving people with disabilities.

Click here to read a plain language summary. 


Bonnielin Swenor - April 27th, 2022

Dr. Swenor is an epidemiologist and associate professor at The Johns Hopkins Schools of Medicine, Nursing, and Public Health. She is the founder and director of the Johns Hopkins Disability Health Research Center, which aims to shift the paradigm from ‘living with a disability’ to ‘thriving with a disability’ through research, education, and policy. Dr. Swenor’s research is motivated by her personal experience with disability. Her work takes a data-driven approach to reducing health and healthcare inequities that impact people with disabilities and addressing barriers to disability inclusion across STEM and higher education.

Click here to read a plain language summary


Colleen Vega & Felicia Hui - April 14, 2022

At this virtual forum, Dr. Colleen Vega, a Clinical Nurse Specialist, and Dr. Felicia Hui, a physician, board certified in palliative care and internal medicine, discuss barriers to palliative care for the IDD population. 

Click here to read a closed captioning transcript. Click here to read a plain language summary


Ryan Easterly - March 23, 2022

At this Forum, Ryan Easterly, Executive Director of the WITH Foundation, shares how WITH is advancing comprehensive healthcare for adults with I/DD by engaging people with disabilities as leaders and experts as well as discuss how healthcare is enhanced when working towards "Nothing About Us, Without Us".

Click here to read a plain language summary of the virtual forum with Ryan Easterly.