Student Experience: National Down Syndrome Convention

One of my favorite aspects of the Pitt Genetic counseling Program is the wide array of clinical opportunities we receive during our rotations. From cancer, pediatric, and prenatal genetics to more unique experiences like primary care, we basically see it all. On top of that, each student has the opportunity to choose an “optional” rotation which consists of an experience of her/his choice. The Down syndrome community is near and dear to my heart and played a major role in sparking my interest in genetics many years ago. I was therefore thrilled when I had the privilege of completing my optional rotation earlier this summer with the Down Syndrome Center of Western Pennsylvania.

The Down Syndrome Center of Western Pennsylvania works with individuals with Down syndrome and their families by providing health care, information, and other resources. The clinic works alongside other local and national groups to provide specialty care and support for these families. A key national organization is a non-profit called the National Down Syndrome Congress. As luck would have it, the National Down Syndrome Congress was hosting their Annual Convention in Pittsburgh during my optional rotation!

On the weekend of June 27^th-30^th, thousands of people from all across the world gathered at the David L. Lawrence Convention Center in Pittsburgh. Attendees included self-advocates with Down syndrome, families, professionals, and other community members. The Annual Convention is often described as a “giant family reunion” and I can attest to the fact that it felt like exactly that.

I had the opportunity of attending the Convention as a volunteer for the Youth & Adults Conference, which is an empowering experience for individuals with Down syndrome aged 15 and older. The Youth & Adults Conference consists of a packed schedule of special activities and events every day. On my first day volunteering, I was assigned to a group of eight self-advocates with Down syndrome. I spent the entire weekend with the group participating in activities, attending workshops, and even going to dance parties! I arrived at the Convention not knowing exactly what to expect and left with eight new friends. This experience provided me with an invaluable opportunity to interact with a truly special community of individuals. Reflecting on the weekend ultimately allowed me to appreciate the importance of immersing myself in the populations I will work with throughout my genetic counseling career. After all, what initially presented itself as a fun weekend ultimately became one of the most pivotal learning experiences I have had in the program thus far.

If you ever find yourself in a city hosting the National Down Syndrome Congress Annual Convention, I highly recommend signing up for an experience that I promise you will never forget. I just might have to take a trip to New Orleans for the 48^th Annual Convention in 2020!

Stephanie Betts, class of 2020