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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 (koneill@lumindidsc.org) 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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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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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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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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MapHabit Post 1.1Press ReleaseResearch NewsMapHabit Study: Assistive Technology Has Positive Outcomes for Children with Down Syndrome
June 2, 2023

MapHabit Study: Assistive Technology Has Positive Outcomes for Children with Down Syndrome

Study Finds Assistive Technology Has Positive Outcomes for Children with Down Syndrome and Their Caregivers  In partnership with the LuMind IDSC Foundation (LuMind IDSC), MapHabit, a neuroscience-based assistive technology (AT)…
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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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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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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Richard Fisher PhDPress ReleaseANNOUNCEMENT: Richard Fisher Named as Chief Scientific Officer
July 28, 2022

ANNOUNCEMENT: Richard Fisher Named as Chief Scientific Officer

Date: 7/28/2022 Last week, Richard A. Fisher, Ph.D. joined LuMind IDSC as Chief Scientific Officer. Dr. Fisher's appointment follows a five-month, international search to fill this leadership role. "Along with…
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CMS 2 637853496907914721 hGxnESPress ReleaseDown Syndrome Community Responds to CMS Decision
April 8, 2022

Down Syndrome Community Responds to CMS Decision

Date: 4/8/2022 Your advocacy is making a difference! The Down Syndrome Coalition, along with our colleagues from the Down Syndrome Diagnosis Network (DSDN), Down Syndrome Medical Interest Group-USA (DSMIG), International…
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Working Images 12 637837160397962417 kSckNiPress ReleaseCMS Proposal Would Leave Millions of Patients Without Access to FDA Approved Treatments
March 24, 2022

CMS Proposal Would Leave Millions of Patients Without Access to FDA Approved Treatments

Date: 3/24/2022 LuMind IDSC President and CEO Hampus Hillerstrom contributed to UsAgainstAlzheimer's and the Global Alzheimer's Platform Foundation's recent statement in opposition to the proposed rule by the Centers for…
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Working Images 2 637798344095447895 MUqzsMPress ReleaseLuMind IDSC’s Official Statement in Response to CMS Draft Decision
February 7, 2022

LuMind IDSC’s Official Statement in Response to CMS Draft Decision

Date: 2/7/2022 People with Down syndrome are far more likely than the general population to have an Alzheimer's diagnosis by age 65, so access to a new class of Alzheimer's…
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CTA3 637795691102029876 rEtJQ2Press ReleaseNatl. DS Organizations Launch Joint Effort to Change CMS Proposal for Alzheimer’s Treatments
February 4, 2022

Natl. DS Organizations Launch Joint Effort to Change CMS Proposal for Alzheimer’s Treatments

Date: 2/4/2022 Down Syndrome Affiliates in Action (DSAIA), Down Syndrome Medical Interest Group-USA (DSMIG-USA), GiGi's Playhouse Down Syndrome Achievement Centers, Global Down Syndrome Foundation (Global), LuMind IDSC Foundation (LuMind IDSC),…
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LuMind IDSC Down Syndrome Research ConsortiumPress ReleaseLuMind IDSC to Collaborate with Merck to Expand Longitudinal Study of Adults with Down Syndrome
May 11, 2021

LuMind IDSC to Collaborate with Merck to Expand Longitudinal Study of Adults with Down Syndrome

Date: 5/11/2021 May 11, 2021 (Burlington, MA) - LuMind IDSC Foundation today announced a new collaboration with Merck, known as MSD outside the United States and Canada, to initiate several…
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Scientist thumb 637552144235672967 wNifpkPress ReleaseLuMind IDSC Launches LuMind IDSC Research Consortium with AbbVie and Merck Support
April 30, 2021

LuMind IDSC Launches LuMind IDSC Research Consortium with AbbVie and Merck Support

Date: 4/30/2021 Today the LuMind IDSC Foundation, a leading national Down syndrome research and advocacy organization, announced the establishment of the LuMind IDSC Research Consortium to accelerate research into critical…
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Microscope Thumbnail 637544241840197354 JkE3u3Press ReleaseLuMind IDSC and an International Team of Down Syndrome Experts Publish “Opportunities, Barriers and Recommendations in Down Syndrome Research” in Translational Science of Rare Diseases
April 19, 2021

LuMind IDSC and an International Team of Down Syndrome Experts Publish “Opportunities, Barriers and Recommendations in Down Syndrome Research” in Translational Science of Rare Diseases

Date: 4/19/2021 This week, the Down syndrome community is celebrating the release of an article in the journal: Translational Science of Rare Diseases. Led by LuMind IDSC's Chief Science Officer,…
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1 637502995486706739 r6W6zPPress ReleaseNational Organizations Join Forces To Publish New COVID-19 & Down Syndrome Resource
March 2, 2021

National Organizations Join Forces To Publish New COVID-19 & Down Syndrome Resource

Date: 3/2/2021 Today, an important and timely COVID-19 and Down Syndrome Resource ("Resource") was published by a consortium of national Down syndrome organizations: the Down Syndrome Medical Interest Group-USA (DSMIG-USA),…
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PressRelease 637436260844029496 OLrf6nPress ReleaseAlana/MIT Down Syndrome Symposium Press Release
December 15, 2020

Alana/MIT Down Syndrome Symposium Press Release

Date: 12/15/2020 The Alana Down Syndrome Center (ADSC) at MIT hosted the New England Down Syndrome Symposium on November 10, 2020 in collaboration with the Massachusetts Down Syndrome Congress (MDSC)…
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Medical guideliness thumbnailsPress ReleaseLuMind IDSC Foundation is a proud supporter of the 1st Evidence-based GLOBAL Medical Care Guidelines for Adults with Down Syndrome(C)
October 21, 2020

LuMind IDSC Foundation is a proud supporter of the 1st Evidence-based GLOBAL Medical Care Guidelines for Adults with Down Syndrome(C)

Date: 10/21/2020 LuMind IDSC Foundation is proud to share that we are addressing this by supporting the GLOBAL Medical Care Guidelines for Adults with Down Syndrome(C) that were published in…
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MapPress ReleaseMapHabit to Collaborate with LuMind IDSC for Down Syndrome Research
September 15, 2020

MapHabit to Collaborate with LuMind IDSC for Down Syndrome Research

MapHabit is proud to partner with LuMind IDSC Foundation (LuMind IDSC) to offer children with Down syndrome who are 7 to 17 years of age access to the award-winning MapHabit…
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DSCTU thumbnailPress ReleaseMassachusetts General Hospital’s (MGH) Down Syndrome Program Launches Down Syndrome Clinic To You (DSC2U)
August 10, 2020

Massachusetts General Hospital’s (MGH) Down Syndrome Program Launches Down Syndrome Clinic To You (DSC2U)

Date: 8/10/2020 Clinicians at Massachusetts General Hospital's (MGH) Down Syndrome Program have launched the Down Syndrome Clinic To You (DSC2U), an online portal designed to connect families and primary care…
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Human rightsPress ReleaseCOVID-19 and Preserving Human Rights for People with Down Syndrome
March 26, 2020

COVID-19 and Preserving Human Rights for People with Down Syndrome

Date: 3/26/2020 As medical systems plan for a possible flood of COVID-19 patients, healthcare professionals in the United States may draft guidance to ration care in order to ensure the…
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SkotkoCheckup 637290281837412954 U2Ckm4 e1658157824957Press ReleaseLuMind IDSC Foundation & Massachusetts General Hospital Collaborate
February 28, 2020

LuMind IDSC Foundation & Massachusetts General Hospital Collaborate

Date: 2/28/2020 Current estimates suggest that over 95% of individuals with Down syndrome do not have access to a Down syndrome specialty clinic. Researchers at Massachusetts General Hospital (MGH) created…
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thumb doylefam 637170521981852814 3oNXBcPress ReleaseFunding Futures Breaking $1 Million in 2020, Featured in Chicago Parent
January 17, 2020

Funding Futures Breaking $1 Million in 2020, Featured in Chicago Parent

Date: 1/17/2020 Funding Futures began in 2012 when a group of dedicated families in the Chicagoland area decided to host a fundraising event for LuMind RDS (then DSRTF) with live…
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RDS Lumind logos e1659550920907Press ReleaseNational Non-Profits, Lumind RDS And IDSC, Merge To Provide Improved Health, Independence And Opportunities For Children And Adults With Down Syndrome
March 21, 2019

National Non-Profits, Lumind RDS And IDSC, Merge To Provide Improved Health, Independence And Opportunities For Children And Adults With Down Syndrome

March 21, 2019 3:21 p.m. EST Burlington, Mass. – As millions all over the world celebrate World Down Syndrome Day on March 21, two non-profit organizations are taking it one step…
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Thumbnail social mediaPress ReleaseLuMind RDS Foundation and IDSC Collaborate on a Research and Medical Care Facebook Group for Caregivers
January 18, 2019

LuMind RDS Foundation and IDSC Collaborate on a Research and Medical Care Facebook Group for Caregivers

BURLINGTON, Mass. January 18, 2019 – LuMind™ Research Down Syndrome Foundation (LuMind RDS) and International Down Syndrome Community (IDSC) are combining resources and expertise on a collaboration to create the IDSC LuMind RDS…
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JHendrix 637292173184138985 1Press ReleaseLuMind RDS Foundation Appoints James Hendrix, Ph.D. as Chief Scientific Officer
November 1, 2018

LuMind RDS Foundation Appoints James Hendrix, Ph.D. as Chief Scientific Officer

BURLINGTON, Mass. November 1, 2018 – LuMind™ Research Down Syndrome Foundation (LuMind RDS), a non-profit aimed at improving health and independence through high-impact research, today announced the appointment of James Hendrix,…
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office2 637292165716424674 1Press ReleaseLuMind Research Down Syndrome Foundation relocates to Burlington, MA
October 22, 2018

LuMind Research Down Syndrome Foundation relocates to Burlington, MA

BURLINGTON, Ma—(October 22, 2018)—Local nonprofit organization, LuMind Research Down Syndrome Foundation (LuMind RDS), opened its new office at 20 Burlington Mall Road in Burlington, Massachusetts on October 15, 2018. The…
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MDSC LuMind 637292168565090395 1Press ReleaseUnder one roof: LuMind RDS Foundation and Massachusetts Down Syndrome Congress
October 22, 2018

Under one roof: LuMind RDS Foundation and Massachusetts Down Syndrome Congress

BURLINGTON, MA — (October 22, 2018) — LuMind™ Research Down Syndrome Foundation (LuMind RDS) and Massachusetts Down Syndrome Congress (MDSC) are now neighbors working together for the greater good. On October…
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FundingFutures City Winery NY 637292123557708400 1Press ReleaseFUNDING FUTURES CHICAGO EXPANDS TO NEW YORK CITY THIS FALL
April 12, 2018

FUNDING FUTURES CHICAGO EXPANDS TO NEW YORK CITY THIS FALL

Marlborough, MA -(April 12, 2018)- This past January, the sixth annual Funding Futures Chicago (FFC) event raised over $145,000 for LuMind™ Research Down Syndrome Foundation (LuMind RDS) to fund Down syndrome research. Funding…
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