“Being brave, being seen, and having your voice heard”: Perspectives of self‐advocates and families toward accessible and impactful research of Alzheimer's disease in down syndrome
Year: 2025
Type: article
Language: en
Topic: Down syndrome and intellectual disability research
Authors and affiliations:
raw_author_name: Sarah Walter
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute University of Southern California  San Diego California USA
raw_author_name: Lauren Ptomey
raw_affiliation_strings: Department of Internal Medicine The University of Kansas Medical Center  Kansas City Kansas USA
raw_author_name: Elizabeth Head
raw_affiliation_strings: Department of Pathology &amp; Laboratory Medicine, and Neurology School of Medicine University of California, Irvine  Irvine California USA
raw_author_name: Ann Cohen
raw_affiliation_strings: Alzheimer's Disease Research Center University Of Pittsburgh School of Medicine  Pittsburgh Pennsylvania USA
raw_author_name: Joseph Mike Briones
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Henry Shaw
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Brandon Carter
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Jessica Kishner
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Willie Pestolesi
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Anthony Sciullo
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Katy Kolb Olmstead
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Aurelia Carter
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Sara Kishner
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Amy Kolb Tucker
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Lissa Pestolesi
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Maria Briones
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Dana Sciullo
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Kay Sciullo
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Pam Shaw
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute, University of Southern California Alzheimer's Clinical Trials Consortium Down Syndrome and Alzheimer's Biomarker Consortium Down Syndrome Research Partnership Group  San Diego California USA
raw_author_name: Perry Chen
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute University of Southern California  San Diego California USA
raw_author_name: Michael S. Rafii
raw_affiliation_strings: Alzheimer's Therapeutic Research Institute University of Southern California  San Diego California USA