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impact report imageCommunity SpotlightYour Support Matters – A look at LuMind IDSC’s 2024 impact
November 22, 2024

Your Support Matters – A look at LuMind IDSC’s 2024 impact

Over the past year, LuMind IDSC continued to make progress on our initiatives in research, policy advocacy, and connecting with the Down syndrome community.  Our continued success throughout 2024 has…
Shannon Bergstresser
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Author Steve Friedman, Michelle Friedman, and Gwendolyn Friedman pose for the camera.Community SpotlightUncategorizedA Season of Gratitude: Why My Family Supports LuMind IDSC
November 8, 2024

A Season of Gratitude: Why My Family Supports LuMind IDSC

Thirty years ago, our family plans changed when our first child, Gwendolyn, was born with Down syndrome. Over time, we realized life would be different, but just as rewarding –…
Shannon Bergstresser
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Group photo of Rams Without Limits Dance TeamCommunity SpotlightAngie Del Gaudio Awarded Collin Lis Humanitarian Award
November 6, 2024

Angie Del Gaudio Awarded Collin Lis Humanitarian Award

Angie Del Gaudio from Long Beach, CA has been selected as the 2024 Collin Lis Humanitarian Award winner. Del Gaudio created the “Rams Without Limits” after-school dance program for neurodiverse…
Shannon Bergstresser
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RANDResearch NewsCommunity SpotlightPress ReleaseResearch SpotlightRAND report shows benefit of investment in future health outcomes for adults with Down syndrome
September 18, 2024

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 ([email protected]) Investment in Alzheimer’s Research Today Will Yield Health Benefits for the Next Generation of Adults With Down Syndrome, New Report…
Kate O’Neill
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Two men sit side-by-side in a car smiling.Community SpotlightHis Amazing Self: a brother’s reflection on Down syndrome-associated Alzheimer’s Disease
August 15, 2024

His Amazing Self: a brother’s reflection on Down syndrome-associated Alzheimer’s Disease

My brother, Rohan, was born 38 years ago in the city of Bangalore in India. He was born with Down syndrome. When he was three years old, my parents made…
Shannon Bergstresser
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pathways to parity 2Community SpotlightPress ReleaseResearch SpotlightPathways to Parity Program Approved for $250K PCORI Engagement Award
August 13, 2024

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…
Shannon Bergstresser
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Research NewsResearch SpotlightUpdates from AAIC: Down syndrome community boosted by FDA confirmation of label and new anti-amyloid clinical trial
August 2, 2024

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…
Kate O’Neill
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Two LuMind IDSC Employees pose holding the Collin Lis Humanitarian AwardCommunity SpotlightLuMind IDSC Presents the Collin Lis Humanitarian Award to Two Employees
July 11, 2024

LuMind IDSC Presents the Collin Lis Humanitarian Award to Two Employees

In honor of Collin Lis, a kind and loving 11-year-old boy with Down syndrome, LuMind IDSC is presenting the Collin Lis Humanitarian Award to two members of the Down syndrome…
Shannon Bergstresser
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kisunlaCommunity SpotlightPress ReleaseResearch NewsFDA issues approval for new Alzheimer’s drug Kisunla; Down syndrome community is optimistic
July 3, 2024

FDA issues approval for new Alzheimer’s drug Kisunla; Down syndrome community is optimistic

FDA issues approval for Kisunla, new Alzheimer's drug; Down syndrome community optimistic On Tuesday, July 2, the U.S. Food and Drug Administration (FDA) announced the approval of Kisunla (donanemab), an…
Kate O’Neill
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Female student with Down syndrome poses in graduation cap and gown.Community SpotlightNavigating the Road to Graduation for Students with Disabilities
June 12, 2024

Navigating the Road to Graduation for Students with Disabilities

Graduation from high school is a major accomplishment in the journey we each experience through life. According to the U.S. Department of Education’s National Center for Education Statistics, the overall…
Shannon Bergstresser
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Alzheimer's disease in people with Down syndromeCommunity SpotlightPress ReleaseResearch NewsResearch SpotlightDown syndrome population will see a clinical trial of new Alzheimer’s drug
June 11, 2024

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…
Kate O’Neill
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James Lind PortraitResearch SpotlightCommunity SpotlightClinical Trials Day: A Historic Review of the First Clinical Trial
May 17, 2024

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…
Shannon Bergstresser
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CristinaandAveryCommunity SpotlightAn Everyday Hero in Mom: Navigating Down Syndrome Regression Disorder
May 8, 2024

An Everyday Hero in Mom: Navigating Down Syndrome Regression Disorder

There is a quote from author Lance Conrad that states, “I can imagine no heroism greater than motherhood.” For Cristina Rothfuss, a mother of four, navigating a rare condition to…
Shannon Bergstresser
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prescriptionCommunity SpotlightPublicationsResearch NewsResearch SpotlightDown syndrome collaborators now published in Alzheimer’s and Dementia
March 15, 2024

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…
Kate O’Neill
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Feb2018 AlzheimersInDs 637297080437914151 o6UI7EResearch NewsCommunity SpotlightResearch SpotlightLuMind IDSC statement on FDA Advisory Committee for promising Alzheimer’s drug, donanemab
March 8, 2024

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,…
Kate O’Neill
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MedicareInsuranceKitResearch NewsResearch SpotlightStudy: Medicare, Medicaid, and Dual Enrollment for Adults with Intellectual and Developmental Disabilities.
January 31, 2024

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…
Shannon Bergstresser
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Post Header HH 1 e1705618528102Community SpotlightResearch SpotlightMessage from the CEO: a look ahead to 2024
January 18, 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…
Kate O’Neill
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Final Impact Report 2023 imageCommunity SpotlightProgress in 2023 – our annual impact report
December 21, 2023

Progress in 2023 – our annual impact report

Thanks to the extraordinary support and engagement of the Down syndrome community, LuMind IDSC is celebrating a year of outstanding progress. In accelerating research, expanding connections, raising voices, and influencing…
Kate O’Neill
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reuters logoResearch NewsCommunity SpotlightReuters Article: Barriers to Latest Alzheimer’s Treatments for Down Syndrome Community
November 14, 2023

Reuters Article: Barriers to Latest Alzheimer’s Treatments for Down Syndrome Community

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.…
Shannon Bergstresser
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statement headerCommunity SpotlightLuMind IDSC names new Director of Community Programs
September 21, 2023

LuMind IDSC names new Director of Community Programs

Following a five-month, national search, LuMind IDSC Down Syndrome Foundation announced the appointment of Christina Reaves as the new Director of Community Programs. In the newly revised role, Christina will…
Kate O’Neill
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globe opinionCommunity SpotlightResearch NewsResearch SpotlightBoston Globe OpEd People with Down Syndrome Now Left Out of Treatment
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…
Kate O’Neill
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Image of Medicaid insurance cardResearch NewsResearch SpotlightStudy: Use of Medicaid by Adults with Down Syndrome
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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statement headerCommunity SpotlightResearch NewsKey updates on Down syndrome community access to new Alzheimer’s drugs
July 7, 2023

Key updates on Down syndrome community access to new Alzheimer’s drugs

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…
Kate O’Neill
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leqembiResearch NewsResearch SpotlightLuMind IDSC statement on FDA approval of Leqembi
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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smaller Toddler in green sweaterCommunity SpotlightMeet the Black Down Syndrome Association
July 7, 2023

Meet the Black Down Syndrome Association

by guest contributor, Crystal Lotterberry, co-founder of the Black Down Syndrome Association About the Black Down Syndrome Association The Black Down Syndrome Association is helping to create a more inclusive…
Kate O’Neill
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Eligibility Criteria header 1Research NewsPress ReleaseResearch SpotlightExpert panel addresses inequitable access to Alzheimer’s drugs for adults with Down syndrome
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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HH in DC Matt CullenCommunity SpotlightLuMind IDSC joins Advocacy Day on Capitol Hill
May 12, 2023

LuMind IDSC joins Advocacy Day on Capitol Hill

In April, leaders from LuMind IDSC joined with 350 self-advocates, caregivers, and professionals to meet with federal legislators in a national, unified Day of Advocacy coordinated by the National Down…
Kate O’Neill
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Brain researchResearch NewsResearch SpotlightLuMind IDSC Statement re: Donanemab Phase 3 Results
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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Sleep Apnea and Down Syndrome, LuMind IDSC FoundationResearch SpotlightResearch NewsSleep ApneaImportant progress in the treatment of sleep apnea and Down syndrome
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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Hampus and Oskar reading 2023Research SpotlightCommunity SpotlightHope and Action for Down syndrome Alzheimer’s research on WDSD 2023
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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image 6487327Community SpotlightAn athlete’s heart and a charmer’s smile: meet Armond Maillard
March 17, 2023

An athlete’s heart and a charmer’s smile: meet Armond Maillard

March 21st is “Down Syndrome Awareness Day,” a day designated by the United Nations to increase global awareness of Down syndrome and to celebrate the accomplishments of the Down syndrome…
Kate O’Neill
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Steve and GwendolynCommunity SpotlightBeyond Down Syndrome: The Friedman family turns experience into guidance
March 15, 2023

Beyond Down Syndrome: The Friedman family turns experience into guidance

Parent, advocate, and published author, Steve Friedman has used his family's recent experiences to help guide others. With The Essential Guide for Families with Down syndrome, Steve brings a practical…
Kate O’Neill
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fierce biotech headResearch SpotlightResearch NewsFierce Biotech article highlights dearth of inclusion in Alzheimer’s research
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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Tau Tangles in Down syndrome related Alzheimer's diseaseResearch SpotlightPress ReleaseResearch NewsWith support from Lilly, LuMind IDSC launches key research and awareness activities to advance Down syndrome research
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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strong man carries momResearch SpotlightResearch NewsResults from “Challenges of Caregiving” Survey Published in Research Journal
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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Oskar and Hampus croppedResearch SpotlightCommunity SpotlightNew Year Greetings from Hampus Hillerstrom
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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Down syndrome brain and Alzheimer's diseaseResearch SpotlightCommunity SpotlightStatement on accelerated approval of Leqembi to treat mild-stage Alzheimer’s disease in the general population
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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Impact Report ThumbnailResearch SpotlightCommunity SpotlightImpact Report 2022
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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AdobeStock 439291670Research NewsResearch SpotlightNew steps forward in treating Alzheimer’s disease with lecanemab: Clinical trial reveals clear efficacy in removing brain plaque
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 SpotlightDS-CTN Data and Safety Monitoring Board (DSMB)
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 SpotlightLecanemab: New Treatment for Alzheimer’s Disease
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 SpotlightNTG Publishes Advisory on Long-COVID in Adults with Intellectual Disability
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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Random Acts of Kindness during Down Syndrome Awareness MonthCommunity SpotlightRandom Acts of Kindness During Down Syndrome Awareness Month
October 6, 2022

Random Acts of Kindness During Down Syndrome Awareness Month

Nowadays people with Down syndrome live healthier, longer, and more fulfilling lives than the generations before them. Today, children and adults with Down syndrome enjoy lives that they navigate according…
Kate O’Neill
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with doctor3Community SpotlightResearch SpotlightWhy is Down syndrome research important?
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 SpotlightPotential New Therapy for Adults with Down Syndrome
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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LIFE-DSR Down Syndrome Research Study with John CroninCommunity SpotlightResearch SpotlightLIFE-DSR: up close and personal with John
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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Karen Thumbnail 637902881181385222 LFoqJNCommunity SpotlightGoing The Distance: What My Dad Taught Me About Perseverance, By Karen Gaffney
June 8, 2022

Going The Distance: What My Dad Taught Me About Perseverance, By Karen Gaffney

June 8, 2022| By: Karen Gaffney Perseverance: According to Webster’s dictionary, it means “continued effort to do or achieve something despite difficulties, failure, or opposition."  I learned this from my…
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White fam 2 637897602508931862 g2WRHgCommunity SpotlightA Conversation with Brian White on his Upcoming Chicago Marathon to Support LuMind IDSC
June 7, 2022

A Conversation with Brian White on his Upcoming Chicago Marathon to Support LuMind IDSC

Running a marathon is one of those super-human feats that most people only get to enjoy from the comfort of a celebrating audience, or a couch. Yet, this incredible test…
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Mental health thumbnail 637883066020930673 ZMdLxWCommunity SpotlightMental Health and Down Syndrome
May 16, 2022

Mental Health and Down Syndrome

In May we recognize Mental Health Awareness Month. Many families deal with mental health issues throughout all stages of life, and healthcare providers are paying more attention to the links between…
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Books thumbnail 637862258813697804 7z0Xa7Community SpotlightSix Books Written by People with Down Syndrome
April 22, 2022

Six Books Written by People with Down Syndrome

Books transport us to different places, and open our eyes to other ideas and points of view. Sometimes they share the lives and experiences of their authors and teach valuable…
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Research SpotlightA Closer Look at the CMS Decision on Aduhelm and Anti-Amyloid Drugs
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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Washington Post Down syndromeCommunity SpotlightThe Washington Post Publishes Article to Bring Awareness of DS Related Alzheimer’s Disease
April 7, 2022

The Washington Post Publishes Article to Bring Awareness of DS Related Alzheimer’s Disease

On Thursday, April 7, The Washington Post published a thorough, person-centric, and well-written article by reporter Laurie McGinley that we hope will bring renewed awareness of Down syndrome-related Alzheimer's disease.…
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Sleep Apnea and Down Syndrome, LuMind IDSC FoundationCommunity SpotlightSleep ApneaChronic Sleep Conditions and Down Syndrome
March 22, 2022

Chronic Sleep Conditions and Down Syndrome

Every night, a large percentage of the population with Down syndrome struggle to fall asleep. When they do, they might struggle to achieve healthy and restful sleep. In this blog,…
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World Down Syndrome Awareness DayCommunity SpotlightThe Sweet Labor of Love
March 15, 2022

The Sweet Labor of Love

March 15, 2022  Every March, the Down syndrome community honors World Down Syndrome Awareness Day on March 21 (3/21). As part of LuMind IDSC’s “Raise Your Hand” for World Down Syndrome Day initiative, we…
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Working Images 4 637819017100539237 9SnUrxResearch SpotlightCaregivers Evaluate Independence in Individuals with Down Syndrome
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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thumbnail research 637807777713507379 s25318Research SpotlightReport of the Neuroatypical Conditions Expert Consultative Panel
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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Congenital heart defects in Down syndromeCommunity SpotlightUnderstanding Congenital Heart Defects in Individuals with Down Syndrome
February 17, 2022

Understanding Congenital Heart Defects in Individuals with Down Syndrome

February is Heart Month, a time to bring awareness to heart conditions. Congenital Heart Defects affect approximately 50% of babies born with Down syndrome, (compared to 1% of neurotypical children).…
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Working Images 3 637799356844951798 hsJdCACommunity SpotlightHampus Hillerstrom, LuMind IDSC’s CEO Publishes Article in Exceptional Parent Magazine
February 8, 2022

Hampus Hillerstrom, LuMind IDSC’s CEO Publishes Article in Exceptional Parent Magazine

RELIABLE DOWN SYNDROME RESOURCES FOR EVERY FAMILY, FOR EVERY STAGE OF LIFE "Down syndrome research is of huge importance to our community. As people with Down syndrome live longer and…
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Sleep tips for people with Down syndromeCommunity SpotlightSleep ApneaEight Tips to Promote Healthy Sleep Habits for People with Down Syndrome
February 7, 2022

Eight Tips to Promote Healthy Sleep Habits for People with Down Syndrome

Sometimes falling asleep and having a restful night isn’t as easy as we would hope. In some cases, sleeplessness can be helped by tweaking certain routines and fostering healthy bedtime…
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CTA21 637795757952595243 9gVYTjCommunity SpotlightSubmit Comments to CMS so People with Down Syndrome Will Have Equal Access to Alzheimer’s Drugs
February 4, 2022

Submit Comments to CMS so People with Down Syndrome Will Have Equal Access to Alzheimer’s Drugs

ACTION NEEDED BY FEBRUARY 9, 2022: SUBMIT COMMENTS TO CMS SO PEOPLE WITH DOWN SYNDROME WILL HAVE EQUAL ACCESS TO ALZHEIMER’S DRUGS People with Down syndrome have a right to…
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thumbnil 637788036159977298 GdnjdtResearch SpotlightResults from T21RS’s COVID-19 International Survey on Vaccination of Individuals with DS
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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Research Thumbnail 637787229747347480 Qnv5uEResearch SpotlightFive Recent Down Syndrome Research Data Articles to Stay Up to Date
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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Thumbnail 7 637782826288540612 8vQB51Research SpotlightPublication Illustrates Need for Therapies to Address Immune Aging in Down Syndrome
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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Thumbnail28282 637776042868678105 iGlcxzResearch SpotlightLuMind IDSC Statement on CMS Proposed Coverage for Anti-Amyloid AD Drugs
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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Cowboy smiling thumbnail 637755939887035990 xXJYZKCommunity SpotlightLuMind IDSC Impact Report 2021
December 20, 2021

LuMind IDSC Impact Report 2021

2021 was a year of growth for LuMind IDSC. Thanks to donors like you, we were able to expand our services and educational resources, and were able to hear the…
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t people with Down syndrome have a higher risk of obesity and developing Alzheimer’s disease, it’s important to act and promote healthier lifestyles considering preventionCommunity SpotlightTips for Promoting Dietary Changes in Individuals with Down Syndrome
December 10, 2021

Tips for Promoting Dietary Changes in Individuals with Down Syndrome

Having a healthy and well-balanced diet has many benefits. Experts recommend eating healthy foods to prevent chronic diseases. In an earlier blog post, we shared that “Researchers are also learning…
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myds thumb22 637725694493553055 1RfPaPCommunity SpotlightUseful Terms to Understand the Science that Will Benefit Our Loved Ones
November 15, 2021

Useful Terms to Understand the Science that Will Benefit Our Loved Ones

Have you ever wondered what certain scientific terms or acronyms mean? If you're interested in the scientific advances working towards helping your loved one with Down syndrome live healthier and…
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Ojeda girls thumb 637716306571097509 Nz3jaqCommunity SpotlightMy Family Is My Pride
November 4, 2021

My Family Is My Pride

November 4, 2021 In January 2018, amidst the celebration of the birth of their baby daughter, Roberto and Nayeli Ojeda received the news that their new baby Mariana, had Down…
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Understanding Alzheimer's disease and Down syndromeCommunity SpotlightUnderstanding Alzheimer’s Disease and Its Connection to Down Syndrome
October 20, 2021

Understanding Alzheimer’s Disease and Its Connection to Down Syndrome

Today, individuals with Down syndrome enjoy a longer life expectancy and are now able to live into their sixties. Unfortunately, there’s a new challenge that people with Down syndrome and…
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Logos latest 637703221612376031 bRV3dDResearch SpotlightLuMind IDSC, NDSS and NTG Urge the Advisory Council to Take Action on the Needs of the DS Community
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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Oskar222 637701676944671704 5alp1LCommunity SpotlightHampus Hillerstrom, LuMind IDSC’s CEO Publishes Article in Exceptional Parent Magazine
October 18, 2021

Hampus Hillerstrom, LuMind IDSC’s CEO Publishes Article in Exceptional Parent Magazine

October 18, 2021 October is Down Syndrome Awareness Month, and to commemorate it, Hampus Hillerstrom, LuMind IDSC’s CEO, wrote an article for the Exceptional Parent Magazine, a publication that serves the…
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DS Laptop 637701601104828424 f76KLMResearch SpotlightLuMind IDSC and Dr. Nicole White Publish: Parental Perspectives on Research for Down Syndrome
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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Science thumbnail woman 637697337404569641 wdkOsVResearch SpotlightLuMind IDSC and Team of Experts Publish Article on Aging with DS and the Future of Research
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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White thumbnail 3 637692020266216735 nkz2L2Research SpotlightExpert Chat: A Conversation with Dr. Nicole White
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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Michelle and Britney Sullivan 637666090502654137 keclRVCommunity SpotlightMichelle Sullivan: Mother, Fundraiser, and Ironwoman
September 7, 2021

Michelle Sullivan: Mother, Fundraiser, and Ironwoman

September 7, 2021 RUNNING FOR RESEARCH: Good natured and modest, Michelle Sullivan does not consider herself an athlete. Not even with the three marathons and ironman races already under her…
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Untitled design 1 637648876374291956 BiEMpIResearch SpotlightLuMind IDSC and Other National Groups Urge CMS to Include DS Community in Alzheimer’s Drugs Coverage
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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Back to school thumbnail 637647898590336155 VEupX4Community SpotlightParents of Children with Down Syndrome Share Their Back-to-School Tips
August 17, 2021

Parents of Children with Down Syndrome Share Their Back-to-School Tips

As the summer winds down, we start to notice more stores decking out with fall decorations, and pumpkin flavored everything becomes the harbinger of autumn. Whether we are ready or…
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Book collage 637546788419000812 AVDcWECommunity Spotlight10 Books About Down Syndrome Recommended by Experts, Parents, and Caregivers
August 9, 2021

10 Books About Down Syndrome Recommended by Experts, Parents, and Caregivers

August 9, 2021 In honor of National Book Lovers Day, the LuMind IDSC community is happy to share a curated list of books recommended by medical experts, caregivers, and Woodbine House,…
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Puja 3 thumb 637632348921154913 medeSlCommunity SpotlightThe Crafts of Love
July 30, 2021

The Crafts of Love

July 30, 2021How do you find the time? This is probably a question that Priya and Puja Pandit get all the time. At 15 years old, Priya attends a competitive…
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Working Images 637619591217624374 ABCLrFResearch SpotlightA New Perspective on The Aduhelm Controversy
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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NTG 637617881179191138 OvYQu6Research SpotlightLuMind IDSC signs on to NTG statement re: Aduhelm
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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Adult office working thumb 637607518310209701 KwU6PWCommunity SpotlightTransitioning Into Adulthood: What to Do When Your Loved One With Down Syndrome Becomes An Adult
July 1, 2021

Transitioning Into Adulthood: What to Do When Your Loved One With Down Syndrome Becomes An Adult

July 1, 2021 Fleeing the nest or staying home? What happens when your loved one with Down syndrome becomes an adult? This is what many parents of children with Down…
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Science thumb2 637605608446228211 4oXgNrResearch SpotlightWhy Patient Voices Are So Critical to the Development and Initial Approval of New Drugs
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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Girl on Kayak thumb 637604693066122808 fUxjZECommunity SpotlightTen Useful Tips to Safely Enjoy the Water with Your Loved One with Down Syndrome
June 28, 2021

Ten Useful Tips to Safely Enjoy the Water with Your Loved One with Down Syndrome

June 28, 2021 As the weather starts to warm up, some of us probably can’t hide our eagerness to jump into a lake or go on a kayaking adventure. According…
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AD Thumbnail 637595246892440932 5rchIRCommunity SpotlightConcerned About Alzheimer’s Disease? Signs That Your Loved One Should Have a Healthcare Evaluation
June 17, 2021

Concerned About Alzheimer’s Disease? Signs That Your Loved One Should Have a Healthcare Evaluation

June 17, 2021
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Omar Vertical logo sky 637595301885254208 YenCRRCommunity SpotlightWhen a Father Becomes a Superhero
June 17, 2021

When a Father Becomes a Superhero

June 17, 2021 We all think of our dads as superheroes, and today at LuMind IDSC as we celebrate all fathers and father- figures, we could not think of a…
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Neurons Thumb 2 637586787554315783 8bpUG0Research SpotlightFDA Approves Biogen’s Aduhelm, the First New Drug for Alzheimer’s Disease Since 2003
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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T21 637581587618950676 OzZ4XtCommunity SpotlightFamily Voices for T21RS Virtual Conference
June 1, 2021

Family Voices for T21RS Virtual Conference

June 1, 2021 When Jay Nothnagle was born in 1974, he was diagnosed with Down syndrome. The advice his young parents received from their physician was to “institutionalize him as…
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JCM Life DSR 637565187548379577 D0m2DjResearch SpotlightCross-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

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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Yoga thumbnail 637565006252054406 cS2tg3Community Spotlight6 Tips to Make Physical Activities Fun for Individuals with Down Syndrome
May 13, 2021

6 Tips to Make Physical Activities Fun for Individuals with Down Syndrome

May 13, 2021
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Dr Chicoine Thumbnail 637559047426416126 SObrv8Community SpotlightGetting to Know the Expert Behind “Ask Dr. Chicoine”
May 10, 2021

Getting to Know the Expert Behind “Ask Dr. Chicoine”

May 10, 2021 Have you heard of myDSC’s feature “Ask Dr. Chicoine”? It is a convenient and reliable tool where members can ask an expert health-related questions for people with Down syndrome.…
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Burque Thumbnail 637557222140700419 WTHKnlCommunity SpotlightLittle Did I Know
May 4, 2021

Little Did I Know

May 4, 2021 When the doctor handed me William for the first time and sat down on my hospital bed to tell me she thought William — though he was…
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Chart thumb 637582434103827431 c86kllResearch SpotlightLuMind 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’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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CristinaThumbnail 637544269464352785 kO0SEGCommunity SpotlightGrowing Up and Moving Out with Down Syndrome – How A Group of Families Created Independent Living Opportunities in Austin, Texas
April 14, 2021

Growing Up and Moving Out with Down Syndrome – How A Group of Families Created Independent Living Opportunities in Austin, Texas

April 14, 2021 Ashley Sanchez was among the first to join the online platform myDSC (my Down Syndrome  Community) in September 2020 because, she said, she saw its usefulness right away. For…
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Arts and Blues Thumbnail2 637538165685692059 hpenvjCommunity SpotlightVirtual “Night of Art and Blues” Fundraising Event Knocks It Out of the Park
April 12, 2021

Virtual “Night of Art and Blues” Fundraising Event Knocks It Out of the Park

April 12, 2021 For the ninth consecutive year, volunteers in Indiana hosted a successful “A Night of Art and Blues” event in February to support LuMind IDSC. Previously a formal…
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Julia and Michael Thumbnail 637532342371738195 nUMhYjCommunity SpotlightJulia Toronczak is Competing in a Half Ironman Triathlon to Raise Funds for Down Syndrome Research
April 5, 2021

Julia Toronczak is Competing in a Half Ironman Triathlon to Raise Funds for Down Syndrome Research

April 5, 2021 Julia Toronczak is very open about why she advocates for Down syndrome research: Everything she does is with her brother’s future and wellbeing in mind and for…
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small blue shirt man 637508834175777331 X8tIOaResearch SpotlightFindings Released for Ongoing Study of Clinical Trial Participation by the Down Syndrome Community 
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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41687 637463025378411882 uQkZYOResearch SpotlightLuMind IDSC is Excited About a New Publication in the Journal of Patient-Reported Outcomes
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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CTAD thumbnail 637443148719594473 Ti8MmbResearch SpotlightLIFE-DSR Natural History Study Blood Biomarker Data Shared at CTAD
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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T21RS Newsletter 637443187039343668 RX5QkOResearch SpotlightLuMind IDSC Acknowledged by T21RS For Work on COVID-19 Survey
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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