History

The NCDSA would like to thank all past and present board members, our families, volunteer and partners for the work and dedication to the Triangle Down Syndrome Network over the past 21 years. Please join us in celebrating the legacy of the Triangle Down Syndrome Network and the new beginning of the North Carolina Down Syndrome Alliance.

Celebrating the Legacy

In 1987, a small group of families of babies and young children with Down syndrome came together in a very casual way.  They met at a church near the UNC-Chapel Hill hospital.  A couple of years later, the group began to refer to themselves as the Triangle Down Syndrome Network.  In 1995, the group organized a conference and reached out to professionals in the genetics department at Duke University Medical Center who were considering forming a Down syndrome specific clinic.  The first Comprehensive Down Syndrome Clinic was held in July of 1995 as the two groups worked together to build a larger membership base.  Professionals from Duke assisted the Triangle Down Syndrome Network in filing their articles of incorporation and in 1998 this goal was accomplished.  The newly organized TDSN created a national award-winning New Parent Book. The New Parent Book started with information, photos, and stories in a large, three-ring binder and has grown into a full color publication with information and resources for families beginning their journey as a parent of a child with Down syndrome.

TDSN flourished as a grassroots, volunteer non-profit organization under the supervision of an active board of directors and numerous family members. The first paid staff person was a Program Director from 2008 – 2012, followed by another Program Director from 2013 – 2015. Several part time office assistants have worked in the office and in August 2016, the first Executive Director was hired.

TDSN has been sustained throughout the years with numerous small fundraisers in addition to our largest annual event, the Buddy Walk, beginning in 1999. The Buddy Walk has grown from a small outing to a full-scale family fun day with over 1600 attendees. Fundraising has gone from pledge sheets and raffle tickets to online registration and fundraising with. Buddy Walk guests have included: Chris Burke, the actor who played Corky on the television series “Life Goes On;” Rachel Coleman, producer and actress of “Signing Times” educational series teaching ASL; and most recently, Cristina Sanz and

Rachel Osterbach from A&E’s Emmy winning television series about individuals with Down syndrome, “Born This Way.”

In addition to supporting new parents in the Triangle area, TDSN began to extend their New and Expectant Parent program to the Eastern Part of the state. TDSN created the first Community group of parents in Eastern NC. They held the very first Eastern NC Buddy Walk in 2017. In 2018, TDSN launched the NC First Call Program. The TDSN began to serve families in 81 of the 100 counties in North Carolina. In 2019, the TDSN began to partner with other local Down syndrome non-profits in the state to train their parents to become NC First Call Mentors.

As the TDSN began to expand throughout the state the North Carolina Down Syndrome Alliance was born. The NCDSA vision is to expand the First Call Parent Program and other Educational programs across the state. They plan to expand local community groups into underserved areas and partner with other local non-profits to ensure that every single baby born with Down syndrome receives a joyous welcome and parents receive the support and resources they need.

As of January 1, 2020, the TDSN will be known as the North Carolina Down Syndrome Alliance. The expansion will begin in early 2020 to include a 3-phase rollout. The next local community groups to form will be the Southeastern Community Group and the Sandhills Community Group. The NCDSA will open a satellite office in Eastern NC to serve that region of the state.  The families in the Triangle will belong to the Triangle Community group. Each group will have trained parent mentors, volunteers, programming and social events consistent with the needs of the area it serves.

This is an exciting step for the newly formed North Carolina Down Syndrome Alliance. It is, and always has been, our goal and vision to provide education and resources to individuals with Down Syndrome and expand our partnerships with the medical community and other organizations. It is a critical step in order for us to train a generation of individuals with Down syndrome who have unlimited potential. These individuals can be, and are, productive members of society and should not be defined by the fact that they have Down syndrome. It is our goal that others see beyond the characteristics of Down syndrome and see each of them for the person they are.