Celebrating Connections: PALS Programs

I learned about Down syndrome when I was two years old. My brother Jason had just been born, and while my family listened to a diagnosis and shouldered the weight of many questions, I stepped into my new role as a big sister.

Jason and I grew up together—sharing friends, dodging bullies, and making memories. You know that saying, “Dance like no one is watching, love like you’ve never been hurt, sing like no one is listening, live like heaven is on Earth”? That fits Jason word for word. Jason helped me find joy in every moment and showed me beauty in places people tend to overlook.

As a sophomore in high school, I worked with two of my friends to start a camp for young adults with Down syndrome.

Camp PALS became a reality in 2004. The concept was simple: young adults with Down syndrome were paired up one-on-one with peers who did not have a disability. After all, Jason had a lasting impact on me. Why not share that experience with as many others as possible?

Our first summer brought together 16 campers and 16 volunteer counselors for the week. We spent the time together on a college campus, and we planned trips, sports, and other group events.

Almost ten years later, I am writing from my home (and now office) in Northern Virginia after returning from a weekend board retreat in New York City. We met to discuss the four programs we held this past summer and the 373 campers and volunteer staff members we brought together across the country.

Camp PALS often feels like a family reunion. And after watching the power of the relationships formed year after year, I can’t help but think back to that day when Jason was first born. The uncertainty and fear that filled the hospital room would have disappeared if we had even a glimpse of how Jason would transform our lives.

Recognizing how our campers have inspired every staff member, we decided to give them a chance to inspire the next generation of parents. This summer we launched the Congratulations Project, where our campers took time to write letters to new parents of babies with Down syndrome. They wrote about their lives, their accomplishments, and their goals. We are working with hospitals and local support groups around the country to distribute these letters. For parents that too often are overwhelmed with statistics and limiting predictions, the Congratulations Project hopes to introduce a new voice and give these parents a reason to dream, a reason to hope, and even a reason to celebrate.

Year after year, PALS brings together young adults with and without Down syndrome to form friendships and live like this is heaven on Earth. Working together, we hope that our passion will invite others to do the same.

Jenni Newbury is a 2006 Coca-Cola Scholar. She graduated from Princeton in 2010 with a degree in psychology and elementary education; she also co-founded the Annual Princeton Down Syndrome Conference. She now serves as the Executive Director of PALS Programs. The PALS team is working to promote Down Syndrome Awareness Month in October. You can follow them at blog.palsprograms.org.