“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 accessing new therapies for Alzheimer’s disease, a recent publication in Alzheimer’s & Dementia illustrates why and how healthcare insurers’ prescribing criteria should be adapted to include people with Down syndrome. The analysis and the published recommendations are the result of work by an international effort led by the LuMind IDSC Foundation (Lu ..read more

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 for Adults with Intellectual and Developmental Disabilities. The research group looked at all adults with intellectual and developmental disabilities in Medicaid and Medicare over 9 years and described enrollment patterns. In the study researchers highlight the major service Medicare provides, especially in adults with IDD under 65 years of age. Additionally, specific enrollment p ..read more

“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 syndrome, encapsulate the purpose of our mission here at LuMind IDSC. His name is Rohan, and he recently spoke these words at a small event convened by LuMind IDSC to discuss the topic of Down syndrome-associated Alzheimer’s disease.  The event brought together parents, self-advocates, clinicians, local community leaders, and policymakers to learn more about the progress we have made, the work we still need to do, and the hope we have fo ..read more

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 change, we’re proud of our accomplishments and inspired for all that’s ahead. Click here to read the full impact report. Missed a few stories this year? Check out our blog articles: Community-related, and Research-related Want to be part of what’s coming up in 2024? Register for our newsletter, sign up for myDSC (it’s free!) or follow us on social media: FB, Insta, LinkedIn ..read more

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. There is a 90% chance of a person with Down syndrome to be diagnosed with Alzheimer’s disease at some point in their life. It’s why he is leading the charge and advocating for change to address the current inequities facing the Down syndrome community. “The goal is to make sure we get access,” he said. “Ideally, we needed to be part of these trials from the beginning.” You can read more about the inac ..read more

Down syndrome leader Christina Reaves will lead community programs for LuMind IDSC 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 lead key initiatives for the organization, including the digital resource platform myDSC and the popular Family Weekend annual meet-up event. “In addition to her outstanding track record in program development, Christina brings 20 years of community-based knowledge to our organization.  I’m confide ..read more

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 respective organizations and the parents of sons who have Down syndrome. The opinion piece outlines inaccessibility of Alzheimer’s drugs to the Down syndrome community, and calls on government, policymakers, and pharmaceutical decision-makers to take steps to correct this ongoing injustice. Read the full OpEd piece online, here.  Download a PDF of the piece here. Sign the public petition calling for equal access to ..read more

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 found that over 123,000 adults with Down syndrome in the United States from 2011-2019 were enrolled in Medicaid. The overall results of the study illustrate that Medicaid plays a key role in insuring adults with Down syndrome and facilitating access to health care services.  The consistent and near-universal enrollment in Medicaid by the Down syndrome population shows that Medicaid data can be a gr ..read more

Five takeaways for the Down syndrome community: Updates on accessing the new Alzheimer’s drugs LuMind IDSC is working on many levels to break down the barriers that currently prevent people with Down syndrome and Alzheimer’s from accessing newly developed drug therapies that slow the progression of Alzheimer’s disease. Here’s a quick overview on the latest developments. Download PDF of this guide What is the connection between Alzheimer’s and Down syndrome? Individuals with Down syndrome have a higher risk of developing Alzheimer’s disease than the general population, and an ..read more

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) provider that leverages visual care plans, released results from their feasibility study showing highly statistically significant improvements in independence and quality of life in children with Down Syndrome, and their support circle. MapHabit and LuMind IDSC Foundation’s partnership began in 2020 with the goal of offering families of children with Down Syndrome ..read more