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Welcome to LuMind IDSC’s repository of information for our sister organizations looking to share the latest information on Down syndrome research, opportunities for involvement, and community news.

SHARE WITH YOUR COMMUNITIES

Research Resources

Affiliates accordionThe latest addition to the Resource Library is a Resources for Professionals category. This section is dedicated to the more technical articles for professionals in the medical and research fields. We encourage you to invite your physicians and clinicians to join myDSC.org for free to access these articles and more.

IRB, PI, amyloid plaques, natural history studies, clinical trials—what does it all mean? Seasoned researchers understand these abbreviations and terms commonly used in the scientific world, but what about the rest of the population?

If you’re interested in helping the Down syndrome community break the knowledge barrier preventing them from participating in research, our Research Glossary is a great starting point. It includes all the terms and abbreviations your audience needs to understand the science that will help their loved ones live a longer and healthier life. Please feel free to share it!

Download Here

Research Glossary 05.22

Affiliates 2 imageLuMind IDSC wants to reach as many families as possible with news of how they can get involved in current research studies. Please use this page as a reference for communicating DS-related research opportunities to your community! Thank you for helping raise awareness of Down syndrome research.

LIFE-DSR

The Down Syndrome Clinical Trial Network (DS-CTN) is a collaboration of 15 Down syndrome medical clinics in ten U.S. states designed as a future framework to conduct large-scale, multi-site trials under the supervision of experienced clinicians who are experts at providing medical care for individuals with Down syndrome.

For more information download the bulletin here!

Find more opportunities for research involvement here!

Use our Clinical Trial Finder tool:

Clinical trials are important for discovering new treatments, as well as new ways to detect, diagnose, and reduce the chance of developing conditions. Get your community involved by clicking the link below:

Clinical Trial Finder

The following pages of this document contain links to YouTube videos from our #myDSmoment research awareness campaign.

Since our affiliates share our goal of raising awareness and understanding of Down syndrome research, we encourage sharing of these posts on your own accounts.

You can post the YouTube links directly on your preferred social media channel. Please consider also linking to our #myDSmoment landing page, which contains further information for individuals and families interested in taking the next step for research:

Download Document Here

Research Awareness

LuMind IDSC, the National Down Syndrome Society (NDSS) National Task Group on Intellectual Disabilities and Dementia Practices, (NTG) and Down Syndrome Affiliates in Action (DSAIA) are collaborating to catalyze a community-wide response to the federal Centers for Medicare & Medicaid Services (CMS) draft decision on the use of monoclonal antibodies for the treatment of Alzheimer’s disease. The CMS policy, if enacted, will place significant roadblocks on the path to future treatment possibilities for people with Down syndrome and Alzheimer’s disease. See the LuMind IDSC statement hereAffiliate leaders and professionals working in the Down syndrome field are encouraged to:

  1. Take immediate steps to submit an official comment to CMS using available templates 
  2. Encourage your wider community to submit comments to CMS online, here: https://www.ndss.org/cms-comment/

The deadline for submitting an official comment is February 9, 2022.

Resources:

  1. NDSS guide CMS Social Guide for Affiliates NDSS.pdf
  2. DSAIA's Webinar: Understanding the Consequences of the CMS Draft Decision on Anti-Amyloid Drug
  3. LuMind IDSC statement See the LuMind IDSC statement here.
  4. CMS source documents: https://www.cms.gov/newsroom/press-releases/cms-proposes-medicare-coverage-policy-monoclonal-antibodies-directed-against-amyloid-treatment

 CMS SOCIAL GUIDE FOR AFFILIATES

Community Resources

ANNUAL FAMILY WEEKEND

The Annual Family Weekend is a myDSC member-exclusive event. Join myDSC today and check back for 2022's Annual Family Weekend details.

Sponsorship Opportunities Available at All 19 Locations

Individuals, business and organizations have the opportunity to sponsor any of our 19 Family Weekend locations.

LuMind IDSC Sponsorship opportunities allow your company to get your name and logo in front of more than 4,000 people – 1,000 families – in the Down syndrome community.

sponsorship banner website

DSC2U DOWN SYNDROME ORGANIZATIONS PROGRAM

dsc2u 1Only 5% of people with Down syndrome have access to one of the few specialty clinics throughout the US. DSC2U was created by Dr. Brian Skotko, MD, MPP, and the clinical and research teams from the Down Syndrome Program and Lab of Computer Science at Massachusetts General Hospital.

DSC2U creates customized suggestions that are designed to help our loved one get healthcare tailored to their own specific needs. All that caregivers have to do is access the DSC2U platform and answer questions about health, nutrition and optional questions about life skills, community resources and therapies.

We invite you to join us in sharing this incredible resource with your families!

Click the button below to find out more about discounted pricing for organizations!

DSAIA's Webinar: Understanding the Consequences of the CMS Draft Decision on Anti-Amyloid Drug

DSAIA Video


Webinar: Community Affiliate FDA CPIM Briefing

May 20, 2021
Meeting Recording:
Access Here

cpim meeting


Family Voices for T21RS Virtual Conference

Watch Here

Video Cronins


For more past and future webinars click here!


Estos documentos en español pueden ser compartidos con su comunidad y sus lectores:

Información acerca de la enfermedad de Alzheimer y su prevalencia en la población con síndrome de Down:

Señales de inicios de la enfermedad de Alzheimer y cuando es un buen momento para llevar a su ser querido con síndrome de Down a una cita con un especialista:

DESCARGUE AQUI

Visite nuestro blog en español y esté al tanto de los avances médicos, nuestros esfuerzos en la comunidad científica e historias personales de familias en acción.

VISITE EL BLOG

News and Publications

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Community Spotlight

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Research Spotlight

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Press Releases

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Conexión en Español

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Publications

UNLIMITED FREE SPECIALIZED RESOURCES

MYDSC

myDSC is a FREE, online library designed specifically for the Down syndrome community. Curated by trusted professionals, myDSC is a comprehensive directory of evidence-based resources and useful tools for individuals with Down syndrome and their families.

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