NEWS
Press Releases
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
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.
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
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
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
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
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
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
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 his deep scientific and drug development experience, Rich brings more than 40 years of industry and management knowledge to our organization. I am confident his unique background and skills will elevate and accelerate LuMind IDSC’s research strategy. He will move our mission forward, and we’re lucky to have him on board,” CEO Hampus Hillerstrom said.
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 Mosaic Down Syndrome Association (IMDSA), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG), and in partnership with our self-advocates and families, succeeded in removing discriminatory language from an important healthcare coverage determination that would have excluded people with Down syndrome from clinical trials for a new class of Alzheimer’s treatments. Read more…
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.