DS-Connect®, A Great Resource for Families.
Happy Down Syndrome Awareness Month, day 12! We are celebrating by posting a fact about Down syndrome each day in October.during the 31 for 21 challenge. Feel free to share these facts to help spread awareness and acceptance. 31 for 21, Day 12
DS-Connect® is the national Down syndrome registry. Their flyer can be accessed here. It is important for families to make sure their loved one with Down syndrome is registered on this list. The site is run by the federal government, and having accurate statistic and health history information on file about people with Down syndrome can help medical professionals and researchers, connect families with clinical trials and more.
One of the most shocking things I learned at the National Down Syndrome Congress convention this summer is that less than 40 families in the state of Nebraska have registered their loved one with Down syndrome on this registry. Now, I have to admit, the registration process takes a little time, and passwords have to be updated every 10 months due to government security regulations, but it is so important that you do so. , How can we expect the Down syndrome population to be represented by government when they are making policies, if they don’t have accurate information about our community members?
You can do your part.
Advocate for your loved one with Down syndrome.
We can do way better than 40.
Register on the DS-Connect® website.
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Down Syndrome Advocates in Action Nebraska, is a group for parents run by parents.