Our Mission

We are a volunteer group of parents, friends and families committed to raising awareness and understanding of Down syndrome, and to removing societal barriers that place limits on our children’s ability to be valued and contributing members of our community.

Our Vision

Every person, regardless of their developmental strength or disability has the right to be accepted, to work, and to feel valued in the community. These are priceless assets that should be readily available to our children.

We will “Spread our Wings” and have a stronger impact as a volunteer group of advocates by:

• fundraising in the community and using those funds to provide special services in the form of Occupational, Speech and Music Therapy to help our children and young adults develop and grow;

• raising awareness of Down syndrome by developing affiliate groups across NL and Labrador and using that collaboration to better help all persons with Down syndrome be integrated members of our community;

• to help more people with Down syndrome find the self-esteem and joy of having a real job.

Our History

A snap-shot of our beginning and our growth

The Newfoundland and Labrador Down Syndrome Society started in 1997 with a meeting of a group of parents of children with Down syndrome eager to make a difference in their children’s lives. From that initial meeting, a makeshift Board began to form and monthly meetings were held around various dining room tables.

In the early days of 1998, without the benefit of “non-profit” status, fundraising was difficult, but we persevered and tried a little of everything – from car washes, to writing letters to Legions, to canvasing local charity support groups. The first real donation we were given was a fruit basket from a local grocer. We set up a table at the local Mall, camped out there for an afternoon, and managed to raise all of $100. We were on our way!

In early 1999, we established a collaboration with Noble Drilling through which the Society would receive the funds raised from Noble’s annual charity golf tournament.

With our small office and a limited source of private funding – and no Government funding, we began the next chapter in the growth of NLDSS:

  • in October 1999, the Newfoundland and Labrador Down Syndrome Society was incorporated;
  • in 1999, we opened our first office at 237 Pennywell Road in a space donated by the Vera Perlin Society, where we had a work station and a Library/Resource Centre;
  • in April 2000, we participated in our first National Down Syndrome Conference held in Cape Breton where we learned a lot about other Society activities;
  • in 2003 we hired our first Advocate with Down syndrome to work in the office, and we hired our first part-time speech therapist to help our kids;
  • in 2004 we hosted the National Down Syndrome Conference – a huge success!

Ten years later, we have moved into a slightly bigger office space, we still have Adam Johnston – our advocate with Down Syndrome working in our office/ resource centre, and we now have 4 Speech and Occupational Therapists on contracts – providing crucial services to our children. The ability to use our fund raising efforts to pay for these services – and thereby directly make a difference in the lives of our children – is a cornerstone achievement of NLDSS.

In 2015, we added a Music Therapy program to our suite of services to compliment the current progress and success of the Speech and OT programs.

It is all about ability – not disability, and “there is so much more to us than meets the eye…”

Board Of Directors

Chair – Rob Harvey

Vice Chair- Vacant

Secretary- Ruby Thorne

Treasurer- Sue Horne

Linda Roberts
Caron McDonald
Cheryl Barrett
Jennifer Murphy
Mike Billard
Chris Adams

If you are interested in applying to volunteer with our Board of Directors please email office@nldss.com