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September 18, 2023

Boston Globe OpEd People with Down Syndrome Now Left Out of Treatment

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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September 16, 2023

Study: Use of Medicaid by Adults with Down Syndrome

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…
Shannon Bergstresser
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July 7, 2023

LuMind IDSC statement on FDA approval of Leqembi

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…
Kate O’Neill
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June 1, 2023

Expert panel addresses inequitable access to Alzheimer’s drugs for adults with Down syndrome

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…
Kate O’Neill
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Brain researchResearch NewsResearch Spotlight
May 3, 2023

LuMind IDSC Statement re: Donanemab Phase 3 Results

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…
Kate O’Neill
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March 29, 2023

Important progress in the treatment of sleep apnea and Down syndrome

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…
Kate O’Neill
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March 21, 2023

Hope and Action for Down syndrome Alzheimer’s research on WDSD 2023

Each year, the Down syndrome community and our supporters – family, friends, businesses, organizations and others – honor our loved ones on World Down Syndrome Day. This year, it feels…
Kate O’Neill
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March 2, 2023

Fierce Biotech article highlights dearth of inclusion in Alzheimer’s research

"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…
Kate O’Neill
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February 23, 2023

With support from Lilly, LuMind IDSC launches key research and awareness activities to advance Down syndrome research

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…
Kate O’Neill
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January 26, 2023

Results from “Challenges of Caregiving” Survey Published in Research Journal

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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January 18, 2023

New Year Greetings from Hampus Hillerstrom

Dear Friend of LuMind IDSC, Recently, I spoke with a family whose newborn baby had heart surgery. As many of you who have been through similar experiences can attest to,…
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January 10, 2023

Statement on accelerated approval of Leqembi to treat mild-stage Alzheimer’s disease in the general population

On Friday, January 6, the U.S. Food & Drug Administration (FDA) granted accelerated approval for lecanemab, an anti-amyloid drug to treat Alzheimer’s disease that was developed by Eisai and Biogen.…
Kate O’Neill
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December 8, 2022

Impact Report 2022

Our Impact Report 2022 highlights our accomplishments as an organization during a remarkable year. 2022 saw Down syndrome research receive unprecedented attention from policymakers, the media, and the pharmaceutical and…
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December 5, 2022

New steps forward in treating Alzheimer’s disease with lecanemab: Clinical trial reveals clear efficacy in removing brain plaque

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…
Kate O’Neill
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DS-CTN Data and Safety Monitoring BoardPress ReleaseResearch Spotlight
November 16, 2022

DS-CTN Data and Safety Monitoring Board (DSMB)

LuMind IDSC and the Down Syndrome Clinical Trials Network are pleased to announce the launch of the DS-CTN Data and Safety Monitoring Board (DSMB). This service was created to provide…
Kate O’Neill
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Donanemab Alzheimer's disease treatmentResearch Spotlight
November 1, 2022

Lecanemab: New Treatment for Alzheimer’s Disease

Eisai, a Japanese pharmaceutical company, and its partner Biogen, a Massachusetts-based biotechnology company, recently announced positive “topline” results from the clinical trial of their anti-amyloid antibody, lecanemab, in patients with…
Kate O’Neill
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Long-COVID and its impact on cognitive function in adults with intellectual disabilityResearch Spotlight
October 17, 2022

NTG Publishes Advisory on Long-COVID in Adults with Intellectual Disability

In a recent report, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) published an article providing background information on the residual and potentially long-term effects of Long-COVID,…
Kate O’Neill
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October 3, 2022

Why is Down syndrome research important?

Learn more about Down syndrome research Learn more about resources for families Learn more about Alzheimer's disease & Down syndrome
Kate O’Neill
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Brain researchResearch Spotlight
September 16, 2022

Potential New Therapy for Adults with Down Syndrome

September 16, 2022 Research recently published in the journal Science  (Manfredi-Lozano et al., Science 377, eabq4515 (2022)) raises the possibility that a currently approved drug may offer an effective boost…
Kate O’Neill
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September 7, 2022

LIFE-DSR: up close and personal with John

In July 2022, John Cronin and his parents invited LuMind IDSC to follow their family experience as they participated in their LIFE-DSR study visit. This one-of-a-kind peek into research was…
Kate O’Neill
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Research Spotlight
April 19, 2022

A Closer Look at the CMS Decision on Aduhelm and Anti-Amyloid Drugs

AN EXPLAINER FOR THE DOWN SYNDROME COMMUNITY April 15, 2022   BACKGROUND On April 7, 2022, the federal Centers for Medicare and Medicaid (CMS) finalized their coverage policy for drugs known as…
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March 3, 2022

Caregivers Evaluate Independence in Individuals with Down Syndrome

Institutions: Division of Medical Genetics and Metabolism at Massachusetts General Hospital, LuMind IDSC Foundation, the Department of Pediatrics, Harvard Medical School, Cincinnati Children's Research Foundation and the Division of Physical Medicine…
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February 18, 2022

Report of the Neuroatypical Conditions Expert Consultative Panel

EXAMINING ADULTS WITH NEUROATYPICAL CONDITIONS FOR MCI/DEMENTIA DURING COGNITIVE IMPAIRMENT ASSESSMENTS: REPORT OF THE NEUROATYPICAL CONDITIONS EXPERT CONSULTATIVE PANEL July, 2022 Project Principals: Matthew P. Janicki, PhD, Jim Hendrix, PhD, Philip…
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January 26, 2022

Results from T21RS’s COVID-19 International Survey on Vaccination of Individuals with DS

January 26, 2022 In a study funded 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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January 25, 2022

Five Recent Down Syndrome Research Data Articles to Stay Up to Date

January 25, 2022  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…
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January 20, 2022

Publication Illustrates Need for Therapies to Address Immune Aging in Down Syndrome

Impaired immune function is a clear and growing threat to the health and well-being of people with Down syndrome (DS). Understanding how and why the immune system is altered in…
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January 12, 2022

LuMind IDSC Statement on CMS Proposed Coverage for Anti-Amyloid AD Drugs

January 12, 2022 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.…
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October 20, 2021

LuMind IDSC, NDSS and NTG Urge the Advisory Council to Take Action on the Needs of the DS Community

October 20, 2021 LuMind IDSC, the National Down Syndrome Society (NDSS), and the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) recently submitted a formal letter to the…
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October 18, 2021

LuMind IDSC and Dr. Nicole White Publish: Parental Perspectives on Research for Down Syndrome

 October 18, 2021 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…
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October 13, 2021

LuMind IDSC and Team of Experts Publish Article on Aging with DS and the Future of Research

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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October 7, 2021

Expert Chat: A Conversation with Dr. Nicole White

October 7, 2021  From mom of four to Down syndrome researcher. Research Spotlight sat with Nicole White and discussed some of the challenges that prevent parents and caregivers from getting…
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August 18, 2021

LuMind IDSC and Other National Groups Urge CMS to Include DS Community in Alzheimer’s Drugs Coverage

August 18, 2021  LuMind IDSC has joined the National Down Syndrome Society (NDSS) and The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in sending comments to federal…
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July 15, 2021

A New Perspective on The Aduhelm Controversy

People with Down syndrome live longer and more independently now than ever before. Supported by advances in medical care, community programs, and supportive caregiving, people with Down syndrome are leveraging…
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July 13, 2021

LuMind IDSC signs on to NTG statement re: Aduhelm

“It is unknown to what degree aducanumab (Aduhelm) may help people with Down syndrome, as they were not included among the trial participants...” As the conversation around Biogen’s Aduhelm continues,…
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June 29, 2021

Why Patient Voices Are So Critical to the Development and Initial Approval of New Drugs

June 29, 2021 This blogpost from a former FDA insider on the power of the patient helps us understand how drug approval processes are informed by the patient experience, and…
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June 7, 2021

FDA Approves Biogen’s Aduhelm, the First New Drug for Alzheimer’s Disease Since 2003

Burlington, MA, June 7, 2021 - Today marks an important milestone in Alzheimer’s disease research with the approval by the FDA of Aduhelm (aducanumab) from the company Biogen. Aduhelm is the…
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May 13, 2021

Cross-Sectional Exploration of Plasma Biomarkers of Alzheimer’s Disease in Down Syndrome: Early Data from the Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR) Study

May 13, 2021 LuMind IDSC’s Chief Scientific Officer, James Hendrix, and a team of dedicated researchers and clinicians have published a key manuscript from the Down Syndrome Clinical Trial Network…
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May 3, 2021

LuMind IDSC Supported the T21RS COVID-19 Initiative’s International Survey on Patients with COVID-19 and Down Syndrome

May 3, 2021 LuMind IDSC supported the T21RS COVID-19 Initiative that brought about the original survey and the resulting analysis, which was recently published in The Lancet's EClinical Medicine Journal. We…
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March 9, 2021

Findings Released for Ongoing Study of Clinical Trial Participation by the Down Syndrome Community 

March 9, 2021 (Burlington, MA): LuMind IDSC Foundation, the National Down Syndrome Society (NDSS), and pharmaceutical leader Eli Lilly and Company (Lilly) recently released findings of a study that identifies…
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January 15, 2021

LuMind IDSC is Excited About a New Publication in the Journal of Patient-Reported Outcomes

As life expectancy of people with Down syndrome (DS) increases, so does the risk of Alzheimer’s disease (AD). Identifying symptoms and tracking disease progression is especially challenging whenever levels of…
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December 23, 2020

LIFE-DSR Natural History Study Blood Biomarker Data Shared at CTAD

The yearly conference brings together leaders throughout the world who are dedicated to advancing treatment options for Alzheimer’s disease (AD). This year, Jim Hendrix presented the LIFE-DSR blood biomarker data…
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December 23, 2020

LuMind IDSC Acknowledged by T21RS For Work on COVID-19 Survey

LuMind IDSC Foundation President/CEO Hampus Hillerstrom and Chief Scientific Officer James Hendrix acknowledged for their efforts on the T21RS COVID-19 survey. Here is an excerpt from the T21RS Newsletter: Meanwhile,…
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November 4, 2020

myDSC Webinar – Fighting Alzheimer’s Disease in Down Syndrome: There is Hope!

November 12, 2020 1PM ET | 12 PM CT | 11 AM MT | 10 AM PT Learn about the association between Alzheimer's disease and Down syndrome, the latest advances…
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October 29, 2020

The LuMind IDSC Foundation Partners with Eli Lilly and Company to Measure Blood Biomarkers in LIFE-DSR Natural History Study

October 29, 2020 (Burlington, MA). LuMind IDSC Foundation today announced a new partnership with Eli Lilly and Company (Lilly) aimed at addressing the under-representation of adults with Down syndrome in…
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July 17, 2020

LuMind IDSC and NDSS Submit Joint Recommendations for Advancing NIH-Funded Down Syndrome Research

Boston, MA and New York, NY (July 14, 2020) – The LuMind IDSC Foundation and the National Down Syndrome Society (NDSS), the leading national Down syndrome research and advocacy organizations, submitted…
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June 25, 2020

T21RS Publishes Initial Results of COVID-19 and Down Syndrome Survey and Seeks More Participants

I recently had the pleasure of interviewing the Trisomy 21 Research Society (T21RS) COVID-19 Task Force members who launched a study to evaluate the effects of virus on children and…
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March 26, 2020

National Down Syndrome Organizations Combine Efforts to Publish Q&A on COVID-19 and Down Syndrome

PLYMOUTH, MINN., DENVER, BURLINGTON, MASS., ATLANTA, NEW YORK CITY, HAMDEN, CONN. March 27, 2020 – Today, an important Q&A on COVID-19 and Down syndrome was published by a consortium of national…
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February 24, 2020

A Memory Drug for Down Syndrome?

“We started with a situation that looked hopeless, nobody thought anything could be done. But we may have struck gold.” –Peter Walter, PhD. The cognitive features of Down syndrome (DS)…
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February 8, 2020

$60M in NIH INCLUDE Funding for Down Syndrome Research in 2020

We are excited to see an increase in funding for Down syndrome research! In December, President Trump signed a spending package which includes $60 million for Down syndrome research in…
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December 3, 2019

Clinical Trial Volunteers Give The Gift That Keeps On Giving

Ricky Pyne, pictured here with his brother Jack and Jack’s wife, Polly, was featured in Fifty Plus Advocates for his 50-year career participation in Special Olympics and volunteerism. He has…
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October 22, 2019

Biogen Announces New Hope for Alzheimer’s Drug Candidate Aducanumab

On October 22, 2019, the biopharmaceutical company, Biogen, announced that they will be going to the FDA to seek approval for their Alzheimer’s disease drug candidate, aducanumab. If approved, this…
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August 8, 2019

Clinicians Answer Additional Medical Questions From LuMind IDSC Research Rally Panel Q&A

The 2019 Research Rally Breakfast at the NDSC Annual Convention was attended by 400 families of loved ones with DS with over 200 questions for the Research and Medical Care…
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May 13, 2019

LIFE-DSR Study – Why Natural History Studies Are Important on the Path to New Treatments

The LIFE DSR Study is the first investigation of the DS-CTN network. The study aims to increase understanding of AD in DS to enable future drug trials. In the next…
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May 9, 2019

Cerveau Technologies, Inc. Announces Partnership with LuMind IDSC to Expand LIFE DSR Study

The LuMind IDSC Foundation is excited to welcome a new Research Partner to the community! BOSTON–(BUSINESS WIRE)–Cerveau Technologies, Inc. today announced a research collaboration with the LuMind IDSC Foundation (LuMind…
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November 1, 2018

LuMind Research Down Syndrome Foundation Launches the Down Syndrome Clinical Trials Network

BURLINGTON, Mass.  , 2018 – With a combined $3M commitment from the Alana Foundation and biopharmaceutical companies H. Lundbeck A/S and AC Immune SA, the LuMind Research Down Syndrome Foundation…
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July 5, 2018

Published results on the Roche Clinical Trials for CLEMATIS expected in the first half of 2019

Many of you have asked LuMind RDS about the publishing of the results of the Hoffman-La Roche (Roche) trials that took place from 2011 to 2016 with their GABA-A targeting molecule basmisanil…
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June 22, 2018

New Trans-NIH INCLUDE Project for Down Syndrome will provide up to $261M Over 5 Years

MARLBOROUGH, MA. (June 22, 2018) — On Friday, June 21, The National Institute of Health (NIH) unveiled the details of the new trans-NIH initiative devoted to individuals with Down syndrome: the…
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May 26, 2018

Historic ~65% increase for NIH Down syndrome research

Marlborough MA, May 27, 2017 — On Thursday this week, Congress’ House Labor and Health and Human Services Appropriations Subcommittee Chairman Tom Cole (R-OK) announced a historic and major increase…
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March 23, 2018

Increased Commitment to Down Syndrome Research Included in 2018 Omnibus Spending Bill

New trans-NIH Down Syndrome Initiative aims for scientific discoveries to improve the health and neurodevelopment of individuals with Down syndrome LuMind™ Research Down Syndrome Foundation (LuMind RDS) joins other Down…
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