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Alzheimer's disease in people with Down syndrome

Down syndrome population will see a clinical trial of new Alzheimer’s drug

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Major pharmaceutical company announces Down syndrome population will see a clinical trial of new Alzheimer’s drug People with Down syndrome will be invited to participate in a clinical trial of…
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Down syndrome collaborators now published in Alzheimer’s and Dementia

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“Adapting prescribing criteria for amyloid‐targeted antibodies for adults with Down syndrome” published in the journal of the Alzheimer’s Association Drawing attention to policies currently preventing people with intellectual disabilities from…
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LuMind IDSC statement on FDA Advisory Committee for promising Alzheimer’s drug, donanemab

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LuMind IDSC is encouraged by today’s news that the U.S. Food and Drug Administration (FDA) is requesting more time and information before making a decision on the status of donanemab,…
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Study: Medicare, Medicaid, and Dual Enrollment for Adults with Intellectual and Developmental Disabilities.

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Medicare, Medicaid and Dual Enrollment for Adults with IDD Boston University School of Public Health recently published an article in Health Services Research Journal entitled Medicare, Medicaid, and Dual Enrollment…
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Reuters Article: Barriers to Latest Alzheimer’s Treatments for Down Syndrome Community

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Hampus Hillerstrom, CEO of LuMind IDSC Foundation and father to a child with Down syndrome, knows about the barriers people with Down syndrome face in accessing the latest Alzheimer's treatments.…
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Boston Globe OpEd People with Down Syndrome Now Left Out of Treatment

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LuMind IDSC and The Arc of Northeast collaborated on an OpEd that was recently published in The Boston Globe. Authors Hampus Hillerstrom and Jo Ann Simons are leaders of their…
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Study: Use of Medicaid by Adults with Down Syndrome

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Medicaid Enrollment and Service Use Among Adults with Down Syndrome September 16, 2023 In a recently published study in the Journal of American Medical Association (JAMA) Health Studies it was…
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Key updates on Down syndrome community access to new Alzheimer’s drugs

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Five takeaways for the Down syndrome community: Updates on accessing the new Alzheimer’s drugsLuMind IDSC is working on many levels to break down the barriers that currently prevent people with…
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LuMind IDSC statement on FDA approval of Leqembi

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LuMind IDSC issues statement following FDA full approval of Leqembi™ to treat early-stage Alzheimer’s disease  July 7, 2023 In a groundbreaking decision that signals new hope for people with Alzheimer’s…
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MapHabit Study: Assistive Technology Has Positive Outcomes for Children with Down Syndrome

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Study Finds Assistive Technology Has Positive Outcomes for Children with Down Syndrome and Their Caregivers  In partnership with the LuMind IDSC Foundation (LuMind IDSC), MapHabit, a neuroscience-based assistive technology (AT)…
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Expert panel addresses inequitable access to Alzheimer’s drugs for adults with Down syndrome

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Seeking to rectify existing federal and state policies which prevent people with intellectual disabilities from accessing new therapies for Alzheimer’s disease, a group of international experts are calling for modification…
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LuMind IDSC Statement re: Donanemab Phase 3 Results

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Pharmaceutical company Eli Lilly today announced results of a phase III clinical trial that proves their anti-amyloid drug, donanemab, significantly slowed cognitive and functional decline in people with early symptomatic…
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Important progress in the treatment of sleep apnea and Down syndrome

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At the end of March, the US Food & Drug Administration approved Inspire’s Hypoglossal Nerve Stimulator for children with Down Syndrome and significant sleep apnea who are 13 years and…
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Fierce Biotech article highlights dearth of inclusion in Alzheimer’s research

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"Alzheimer's meds are here. But for the Down syndrome community, it's still the 1980s" by Annalee Armstrong, Fierce Biotech An important article from industry publication Fierce Biotech highlights the lack…
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With support from Lilly, LuMind IDSC launches key research and awareness activities to advance Down syndrome research

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2/22/2023 (Burlington, MA) – Today the LuMind IDSC Foundation, a leading national Down syndrome research organization, announced a new collaboration with Eli Lilly and Company (Lilly) aimed at accelerating research…
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Results from “Challenges of Caregiving” Survey Published in Research Journal

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The LuMind IDSC community and caregivers across the U.S. participated in “Challenges of Caregiving,” an online survey of caregiver perspectives on a range of topics that are important to the…
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New steps forward in treating Alzheimer’s disease with lecanemab: Clinical trial reveals clear efficacy in removing brain plaque

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At an Alzheimer’s disease research conference last week, new clinical trial data was presented for an antibody drug candidate called lecanemab.  (Read more about the development of lecanemab here.) An…
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Report of the Neuroatypical Conditions Expert Consultative Panel

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innovation Detection of any cognitive impairment as part of the Affordable Care Act’s annual wellness visit in primary or other health care settings for adults with pre-existing neuroatypical or neurodivergent…
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Report of the Neuroatypical Conditions Expert Consultative Panel

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Detection of any cognitive impairment as part of the Affordable Care Act’s annual wellness visit in primary or other health care settings for adults with pre-existing neuroatypical or neurodivergent conditions…
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Results From T21RS’s COVID-19 International Survey on Vaccination of Individuals With DS

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In a study led by the LuMind IDSC Foundation, the T21RS COVID-19 Initiative launched an international survey to obtain information on the safety and efficacy of COVID-19 vaccines for individuals…
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Five Recent Down Syndrome Research Data Articles to Stay Up to Date

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Recently, two institutions in the Down Syndrome Clinical Trials Network (DS-CTN) published five studies about Down syndrome-related health and wellness, ranging from infectious diseases to mental health, skills, and independence.  This new…
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LuMind IDSC Statement on CMS Proposed Coverage for Anti-Amyloid AD Drugs

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During the past year, LuMind IDSC remained cautiously optimistic about  treatment possibilities that the development of new drugs for Alzheimer’s disease may bring to the Down syndrome community.  Because people…
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LuMind IDSC and Dr. Nicole White Publish “Parental Perspectives on Research for Down Syndrome”

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Dr. Nicole White, Hampus Hillerstrom, LuMind IDSC and a team of experts, recently published an article in the Journal of Applied Research in Intellectual Disabilities, that delves into the intricacies of…
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LuMind IDSC and Team of Experts Publish Article on Aging With DS and the Future of Research

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Dr. James Hendrix, LuMind IDSC's Chief Scientific Officer, along with a team of Down syndrome experts recently published an article in the Journal of Clinical Medicine, as part of the special issue…
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Expert Chat: A Conversation with Nicole White 

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From mom of four to Down syndrome researcher. Community Spotlight sat with Nicole White and discussed some of the challenges that prevent parents and caregivers from getting involved in the…