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If your baby just received a prenatal or postnatal Down syndrome diagnosis, you are probably frantically Googling information about Down syndrome. Unfortunately, much of what you are Googling is probably negative. If you are looking for something a little more positive, here are nine amazing Down syndrome organizations that are both informative and encouraging.
And for those of you here as advocates for people with Down syndrome, these organizations can always use your help through fundraising, donating, or volunteering.
DSDN (Down Syndrome Diagnosis Network)
This is the first organization I used when I found out about Ellie’s diagnosis. They set up really helpful Facebook groups so that you can connect to other people in your same position. My family and friends were all very supportive during my pregnancy, but no one understood what I was going through more than other moms who were pregnant with babies who had Down syndrome at the same time as me. We were able to ask each other questions and use each other to process what was happening to us and our babies. Other than birth groups, the DSDN also has Facebook groups for most conditions that can affect babies with Down syndrome, so you can find parents who are more specifically in similar situations. This resource was the most beneficial tool that I had during my pregnancy.
In addition to Facebook groups, the DSDN sponsors Rockin’ Moms and Rockin’ Dads retreats for parents of children with Down syndrome. The Rockin’ Moms retreat happens each September, and the Rockin’ Dads retreat happens each August. These retreats are for parents only and connect parents of young children with Down syndrome from across the country.
Find ways to donate, fundraise, and volunteer here.
Gigi’s Playhouse
When I was pregnant, I searched for programs that would help Ellie not only when she was little but also as she grew into adulthood; I wanted a full picture of what was ahead of us. During this search, I stumbled upon Gigi’s Playhouse and was thrilled to realize that there was one about 30 minutes from our house.
Gigi’s Playhouse offers advancement opportunities for people with Down syndrome, whether that be through therapy, education, fitness classes, or career training. We have attended language and social programs for Ellie, and they are an excellent opportunity to both learn strategies to help with development and meet other kids with Down syndrome.
There are many ways to support Gigi’s Playhouse, including donating, buying merchandise, and volunteering. You can find more information on this under the “Support” tab here.
Local/State Organizations
Another great resource is your local/state Down syndrome organization. For us, it’s the NCDSA (North Carolina Down Syndrome Alliance). Our state organization is incredible, and we have participated in so many programs sponsored by them.
First call programs for new parents, book clubs, outings, conferences, parents only dinners, advocacy information, teen programs, Buddy Walks, and more are sponsored by the NCDSA, and I am sure that most state Down syndrome associations are very similar.
The Buddy Walk and NC Parents’ First Call Program are two of my favorite ways to give back to our Down syndrome community. The Buddy Walk in my area occurs each October and is filled with games, booths of businesses run by people with Down syndrome, food, and lots of people who love someone with Down syndrome. The culminating activity is of course the walk, which is one mile and occurs at 3:21 in the afternoon. Teams fundraise for this event.
My other favorite program is the NC Parents’ First Call Program. This program matches moms who have babies with a Down syndrome diagnosis with a mentor to help them through their pregnancy and first year. Typically the mentees and mentors live fairly close to each other so that they can meet in person if they wish. While I did not use this program while I was pregnant, I am a mentor to a new mom now and love this experience.
There are so many programs and activities offered by state and local Down syndrome organizations. I highly suggest that you contact yours if you are looking for helpful resources!
You can find opportunities to donate, fundraise, and volunteer for the NCDSA under the “Get Involved” tab here.
Jack’s Basket
As I was researching information for new parents of babies with Down syndrome during my pregnancy, I ran across Jack’s Basket. This organization shares positive stories about Down syndrome, gives medical providers tools to positively deliver a Down syndrome diagnosis, and sends out amazing gift baskets to new parents of babies with Down syndrome.
I loved getting this basket when I was pregnant with Ellie. It had lots of information about Down syndrome, including Bloom, which is my favorite memoir about having a baby with Down syndrome. In addition, there was a baby blanket, a couple of toys, a hand-knit hat, and several other baby items. That basket reminded me that I was not just having a baby with Down syndrome; I was also having a baby who would have the same needs as other babies.
I got my basket during Covid, so they sent it to me in the mail. However, during normal times, families of babies with Down syndrome deliver these baskets. Information on donating basket items, knitting baby goods, donating money, and volunteering as a basket deliverer can be found here under “Volunteer” and “Give.”
Brittany’s Baskets of Hope
Brittany’s Baskets of Hope is another basket service that I received during my pregnancy. Much like Jack’s Basket, the basket was full of information about Down syndrome as well as a knit blanket, homemade bib, and other really cute baby items.
You can donate to Brittany’s Baskets of Hope here.
Zoe’s Toolbox
Zoe’s Toolbox is an organization that didn’t start until after I had Ellie, so I didn’t actually receive one of these. This one is a little different from the other baskets in that it focuses on therapy tools for OT, PT, and Speech that babies with Down syndrome typically need from the ages of 0-2.
This organization became popular very quickly and has a long waitlist. Each box has ~$175 worth of tools in it, and they rely on donors to build the box. If you would like to contribute to their goal of getting a toolbox to every baby with a Down syndrome diagnosis in the U.S., click here.
Love That Surpasses Ministries
Love That Surpasses Ministries is a faith-based non-profit organization that sends out bags of hope to families with a prenatal or postnatal Down syndrome diagnosis. Bags typically include Down syndrome information, a onesie, a book, and other small items.
You can donate to this organization here.
Hope Story
Hope Story is an organization that equally serves medical professionals and parents with a prenatal Down syndrome diagnosis. They do this through their Hope Advocates, who are parents of children with Down syndrome. Each Hope Advocate receives a box of information to take to her OB/GYN that includes information on how to deliver a prenatal Down syndrome diagnosis as well as cards for women receiving a prenatal Down syndrome diagnosis. These cards include information about the Hope Advocate’s child with Down syndrome and contact information for new moms who would like additional support.
One of the main ways to help with this organization is to become a Hope Advocate. Information on this can be found here. If you are not a parent of a child with Down syndrome, you can donate here.
Rising Kites
Rising Kites is a newer organization whose mission is to “provide hospitals, birthing centers, and prenatal clinics with resources that can be immediately distributed to parents who have just learned that their child has a diagnosis of Down syndrome.” Families of newborn babies with Down syndrome can request a Rising Kites bag or receive one from a medical facility. Bags include multiple Down syndrome resources, children’s books, and baby items. In addition, families of children with Down syndrome can join the Rising Kites community to connect with other families in the same state.
In addition to donating, Rising Kites has a great merchandise shop that includes standard t-shirts, hats, and mugs, but also flowers and really cool T21 flower karyotype prints. You can find ways to get involved with Rising Kites here.
Unfortunately, it is often difficult to find positive information about Down syndrome on the Internet. However, these nine Down syndrome organizations can help you find the information and encouragement you need when facing a new diagnosis or needing help down the road.
Leave a comment below if you want to promote any other amazing Down syndrome organizations!
