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 Medicare and Medicaid Services (CMS) that would deny millions of patients–including people with Down syndrome–access to life-saving Alzheimer’s treatments and clinical trials.
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 drugs could not only help those with a current diagnosis but would also generate new data on the efficacy of this type of drug in people with Down syndrome. The CMS decision, if enacted, will place insurmountable roadblocks on the path to future treatment possibilities for anyone with a Down syndrome diagnosis.
This decision, if enacted, openly discriminates against people with Down syndrome, a group of people who have not been included in any of the previous or current clinical trials on Aduhelm or the other monoclonal anti-amyloid antibodies.
Read more about LuMind IDSC’s official statement on the CMS decision.
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), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG) have launched a coordinated effort to catalyze a community-wide response to the recent Centers for Medicare & Medicaid Services (CMS) proposal concerning coverage for monoclonal antibodies directed against amyloid for the treatment of Alzheimer’s disease.
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 sub-studies in the ongoing Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) cohort. LIFE-DSR is a longitudinal study of 270 adults with Down syndrome, their medical histories, blood samples, and neuropsychological testing data.
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 medical issues impacting people with Down syndrome. AbbVie and Merck, known as MSD outside the United States and Canada, are the first members of the LuMind IDSC Research Consortium, an association which is modeled on a previous collaboration between LuMind IDSC and Eli Lilly and Company.
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, James Hendrix, an international team of Down syndrome experts has charted a unified path toward a new future for Down syndrome research with the article: “Opportunities, barriers, and recommendations in down syndrome research.”
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), Global Down Syndrome Foundation (GLOBAL), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG).
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) and Lumind IDSC Foundation (LuMind IDSC).
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 the October 20, 2020 Issue of JAMA, the Journal of the American Medical Association. Publication in JAMA underscores the quality of the Global Guideline and ensures that clinicians across the U.S. have access to this important resource.
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 System as part of an initial research collaboration with LuMind IDSC’s online community myDSC.org