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
Down Syndrome Medical Care: Access & Availability Survey
Surveys are an easy way for families and caregivers to participate in research! In this case, LuMind IDSC is working with local Down syndrome organizations to help families find and access specialized medical care for their loved one with Down syndrome. By completing this short survey, your members can help us identify current accessibility and barriers.
Help Your Community Find Opportunities for Research Involvement
LuMind 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. View our full list of available opportunities for research participation here!
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 LIFE-DSR flyer here!
Let your social media followers know about the LIFE-DSR study with our pre-written social posts here!
Resources for Medical and Research Professionals
The 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.
Your Research Toolbox: How to Talk with Ease About Down Syndrome Research
Research Glossary: Useful Terms to Understand the Science
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!Research Glossary 05.22
Research Awareness Campaign Videos for Sharing
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:Research Awareness
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.
Signing up is easy!
DSC2U DOWN SYNDROME ORGANIZATIONS PROGRAM
Only 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!
Webinars and Videos
DSAIA's Webinar: Understanding the Consequences of the CMS Draft Decision on Anti-Amyloid Drug
Webinar: Community Affiliate FDA CPIM Briefing
May 20, 2021
Family Voices for T21RS Virtual Conference
For more past and future webinars click here!
Recursos en Español
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:
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.