Be the Support We Needed on Day 1

Our Story

An hour after Parker was born, we got his DS diagnosis. It was unexpected and delivered with concern and caution, and the celebration we imagined for that day never quite came. We knew Parker was perfectly ours, but we didn’t know how alone we would feel.

I was a new mom in my early 30s, and I didn’t know a single person with Down syndrome. I was holding my healthy newborn and grieving the baby and the life I’d pictured, both at once. That grief isn’t linear, and nine years later it still finds us.

And so does the joy. Parker is 9, and he makes friends everywhere he goes. He is pure light in our lives.

The Down Syndrome Diagnosis Network (DSDN) exists so that no family has to face that day alone. They support new and expectant parents from the moment of diagnosis, connect them with other families, and work to make sure every diagnosis is delivered in a supportive and factual way.

In 2017, we joined a club we never asked to be in and didn’t know how to cope with. #TheLuckyFew turned out to be the safest place to land. Because of Parker, we’ve met amazing families like ours. I took a chance going to the 2023 DSDN Rockin’ Mom Retreat by myself (!!!), and started making lifelong friends. Among these moms, I found a space where I don’t have to open with an apology or a disclaimer about my son, his milestones (or lack thereof), or the feelings that come with raising a child with Down syndrome.

I’m raising $1,500 this year so DSDN can reach more families like ours. Every gift, whatever the size, helps another parent find what I found: a true community that is a lifeline on our best days, our hardest days, and everything in between.

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Down Syndrome Diagnosis Network (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 lifelong 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 currently reach about 23% of those with a new diagnosis annually and support over 22,000 families that have a child with Down syndrome, with an emphasis on diagnosis and early childhood. We are a recommended resource by the American Academy of Pediatrics.

Your donation enables DSDN to:

• Support and connect families online
• Fuel our Rockin' Family Fund through:
  • Pregnancy Gifts
  • Welcome Gifts
  • Memorials
  • Care Gift Cards
  • Scholarships
  • Support for local organizations
• Provide opportunities for parents to connect, be inspired and recharge at our annual Rockin' Mom™ and Dad retreats
• Talk with medical providers about the diagnosis conversation across the US at national and regional conferences
• Work with OB/GYN residents and medical providers on how to deliver an unexpected diagnosis
• Mail print materials free of charge to local organization, medical providers and families
• Reach thousands of new families joining the DS community each year
• Connect rockin' families to local organizations

Check out our most recent Annual Report for more details.