Down Syndrome Resources
Updated: Dec 6, 2021
Navigating a new diagnosis isn’t easy, there is a lot of information to take in and it can be overwhelming.
When you google Down syndrome you’ll get hundreds of search results, some filled with helpful content and others not so much.
I’ve started to compile a list of some amazing organizations and resources I’ve come across.
I'll continue to add to and update the list, if you have any resources you think would be helpful to post please send me a message via my contact form.
The Down Syndrome Diagnosis Network DSDN
I highly recommend starting your search for information with the DSDN, their website is filled with amazing content. They also have multiple facebook groups that connect you with other families. I lean on these groups for advice and support.
Believe me when I say the best resource you’ll find is other parents of children with Down syndrome. I have made connections through the DSDN that have evolved into friendships.
“DSDN is the largest national organization supporting new and expectant parents with a Down syndrome diagnosis. The mission of the Down Syndrome Diagnosis Network is to connect, support, and provide accurate information to parents - and the medical professionals who serve them - from the time of diagnosis through age 3, while fostering the opportunity for life long connections. Our vision is that every Down syndrome diagnosis will be delivered in an unbiased, factual, and supportive way every time, and that families can quickly find meaningful connections.”
We received a basket for Levi and I cried when I opened it. It was so nice to feel Levi’s diagnosis being celebrated. We heard ‘sorry’ a lot after receiving his diagnosis so it was wonderful to be congratulated.
“Jack’s Basket is a 501(c)3 nonprofit organization with a mission to celebrate babies with Down syndrome. We strive to ensure that every new and expectant parent is provided resources and avenues of support within the community. We aim to educate medical providers on how to discuss the diagnosis in an unbiased way in hopes that having a baby with Down syndrome is celebrated like any other.
Since March 2014, Jack's Basket has celebrated over 3,905 babies across all 50 states and in 29 countries. We have welcomed 522 babies in 2021 thus far.”
I really wish I had known about Julia’s Way when I began my breastfeeding journey. We had a very challenging time start but Levi is currently a breastfeeding champ and all the hard work we put into it was definitely worth it. I just might make a blog post about that down the road.
“Julia's Way is a 501c3 non-profit organization dedicated to inspiring parents, medical professionals, and the general public to reimagine what's possible for those living with Down syndrome through education, advocacy, and awareness.
Our first project, a video entitled Why be normal was released in March of 2017 and has had over 25,000 views and has been shared several hundred times.
Our current project focuses on inspiring and encouraging mothers of children with Down syndrome to breastfeed their babies as well as educating medical professionals on how to support mothers to help their babies breastfeed successfully.”
National Down Syndrome Society
"The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome."
NVISION Eye Centers Eyesight & Down Syndrome
This article identifies the common eyesight issues in people with Down syndrome, ways to identify these issues and the treatment options available.