2025: A Year of Milestones in DS-AD
The medical advances made within the Down syndrome community over the past few decades have been nothing short of amazing. The life span of individuals with Down syndrome has more…
RAND report shows benefit of investment in future health outcomes for adults with Down syndrome
RAND report shows benefit of investment in future health outcomes for adults with Down syndrome
10/1/2024 | For immediate release | Contact: Kate O'Neill (koneill@lumindidsc.org) Investment in Alzheimer’s Research Today Will Yield Health Benefits for the Next Generation of Adults With Down Syndrome, New Report…
Pathways to Parity Program Approved for $250K PCORI Engagement Award
Pathways to Parity Program Approved for $250K PCORI Engagement Award
Project will empower advocates, enhance research for people at high risk of Alzheimer’s disease who have Down syndrome Washington, D.C. (Aug. 13, 2024) – The Alliance for Aging Research and…
Updates from AAIC: Down syndrome community boosted by FDA confirmation of label and new anti-amyloid clinical trial
Updates from AAIC: Down syndrome community boosted by FDA confirmation of label and new anti-amyloid clinical trial
Information revealed at the 2024 AAIC conference on the ACTC-DS-led study in DS-associated Alzheimer's disease with Lilly’s anti-amyloid drug Kisunla. At the 2024 Alzheimer’s Association International Conference in Philadelphia this…
Down syndrome population will see a clinical trial of new Alzheimer’s drug
Down syndrome population will see a clinical trial of new Alzheimer’s drug
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…
Clinical Trials Day: A Historic Review of the First Clinical Trial
Clinical Trials Day: A Historic Review of the First Clinical Trial
James Lind, a United Kingdom's Royal Navy surgeon, is considered the “Father of Clinical Trials.” Each year, on May 20, we celebrate Clinical Trials Day and Lind's contribution to the…
Down syndrome collaborators now published in Alzheimer’s and Dementia
Down syndrome collaborators now published in Alzheimer’s and Dementia
“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…
LuMind IDSC statement on FDA Advisory Committee for promising Alzheimer’s drug, donanemab
LuMind IDSC statement on FDA Advisory Committee for promising Alzheimer’s drug, donanemab
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,…
Study: Medicare, Medicaid, and Dual Enrollment for Adults with Intellectual and Developmental Disabilities.
Study: Medicare, Medicaid, and Dual Enrollment for Adults with Intellectual and Developmental Disabilities.
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…
Message from the CEO: a look ahead to 2024
Message from the CEO: a look ahead to 2024
“I want to enjoy my life for a long time. I want to grow old just like everyone else.” These two sentences, spoken by a 37-year old man with Down…
Boston Globe OpEd People with Down Syndrome Now Left Out of Treatment
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…
Study: Use of Medicaid by Adults with Down Syndrome
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…
LuMind IDSC statement on FDA approval of Leqembi
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…
Expert panel addresses inequitable access to Alzheimer’s drugs for adults with Down syndrome
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…
LuMind IDSC Statement re: Donanemab Phase 3 Results
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…
Important progress in the treatment of sleep apnea and Down syndrome
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…
Hope and Action for Down syndrome Alzheimer’s research on WDSD 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…
Fierce Biotech article highlights dearth of inclusion in Alzheimer’s research
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…
With support from Lilly, LuMind IDSC launches key research and awareness activities to advance Down syndrome research
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…
Results from “Challenges of Caregiving” Survey Published in Research Journal
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…
New Year Greetings from Hampus Hillerstrom
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,…
Statement on accelerated approval of Leqembi to treat mild-stage Alzheimer’s disease in the general population
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.…
Impact Report 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…
New steps forward in treating Alzheimer’s disease with lecanemab: Clinical trial reveals clear efficacy in removing brain plaque
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…
DS-CTN Data and Safety Monitoring Board (DSMB)
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…
Lecanemab: New Treatment for Alzheimer’s Disease
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…
NTG Publishes Advisory on Long-COVID in Adults with Intellectual Disability
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,…
Why is Down syndrome research important?
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
Potential New Therapy for Adults with Down Syndrome
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…
LIFE-DSR: up close and personal with John
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…
A Closer Look at the CMS Decision on Aduhelm and Anti-Amyloid Drugs
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…
Caregivers Evaluate Independence in Individuals with Down Syndrome
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…
Report of the Neuroatypical Conditions Expert Consultative Panel
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…
Results from T21RS’s COVID-19 International Survey on Vaccination of Individuals with DS
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…
Five Recent Down Syndrome Research Data Articles to Stay Up to Date
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…
Publication Illustrates Need for Therapies to Address Immune Aging in Down Syndrome
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…
LuMind IDSC Statement on CMS Proposed Coverage for Anti-Amyloid AD Drugs
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.…
LuMind IDSC, NDSS and NTG Urge the Advisory Council to Take Action on the Needs of the DS Community
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…
LuMind IDSC and Dr. Nicole White Publish: Parental Perspectives on Research for Down Syndrome
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…
LuMind IDSC and Team of Experts Publish Article on Aging with DS and the Future of Research
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…
Expert Chat: A Conversation with Dr. Nicole White
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…
LuMind IDSC and Other National Groups Urge CMS to Include DS Community in Alzheimer’s Drugs Coverage
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…
A New Perspective on The Aduhelm Controversy
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…
LuMind IDSC signs on to NTG statement re: Aduhelm
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,…
Why Patient Voices Are So Critical to the Development and Initial Approval of New Drugs
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…
FDA Approves Biogen’s Aduhelm, the First New Drug for Alzheimer’s Disease Since 2003
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…
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
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…
LuMind IDSC Supported the T21RS COVID-19 Initiative’s International Survey on Patients with COVID-19 and Down Syndrome
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…
Findings Released for Ongoing Study of Clinical Trial Participation by the Down Syndrome Community
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…
LuMind IDSC is Excited About a New Publication in the Journal of Patient-Reported Outcomes
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…
LuMind IDSC Acknowledged by T21RS For Work on COVID-19 Survey
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,…
LIFE-DSR Natural History Study Blood Biomarker Data Shared at CTAD
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…
myDSC Webinar – Fighting Alzheimer’s Disease in Down Syndrome: There is Hope!
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…
The LuMind IDSC Foundation Partners with Eli Lilly and Company to Measure Blood Biomarkers in LIFE-DSR Natural History Study
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…
LuMind IDSC and NDSS Submit Joint Recommendations for Advancing NIH-Funded Down Syndrome Research
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…
T21RS Publishes Initial Results of COVID-19 and Down Syndrome Survey and Seeks More Participants
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…
National Down Syndrome Organizations Combine Efforts to Publish Q&A on COVID-19 and Down Syndrome
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…
A Memory Drug for Down Syndrome?
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)…
$60M in NIH INCLUDE Funding for Down Syndrome Research in 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…
Clinical Trial Volunteers Give The Gift That Keeps On Giving
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…
Biogen Announces New Hope for Alzheimer’s Drug Candidate Aducanumab
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…
Clinicians Answer Additional Medical Questions From LuMind IDSC Research Rally Panel Q&A
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…
LIFE-DSR Study – Why Natural History Studies Are Important on the Path to New Treatments
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…
Cerveau Technologies, Inc. Announces Partnership with LuMind IDSC to Expand LIFE DSR Study
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…
LuMind Research Down Syndrome Foundation Launches the Down Syndrome Clinical Trials Network
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…
Published results on the Roche Clinical Trials for CLEMATIS expected in the first half of 2019
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…
New Trans-NIH INCLUDE Project for Down Syndrome will provide up to $261M Over 5 Years
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…
Historic ~65% increase for NIH Down syndrome research
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…
Increased Commitment to Down Syndrome Research Included in 2018 Omnibus Spending Bill
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…
