So, you want to start a Down syndrome parent group. Good for you! We hope you’ll find this information helpful as you begin this process.
The NDSC understands the importance of feeling connected within your community. One of the first things we do when we hear from new parents, or parents moving to a new area, is refer them to a local or regional Down syndromeorganization. We know that you are best able to help parents “on the ground” in your area.
Basically, a Down syndrome organization is a group of parents (and grandparents, siblings, other family members and friends) who are concerned with issues that are related to Down syndrome. They may also include members who are educators, medical professionals, and others who have an interest in Down syndrome, but generally speaking the bulk of the membership will be parents.
These groups can serve many purposes. Some start small and remain intimate circles of people who often become close friends. Others begin growing almost immediately, adding programs, services and membership. Today, the National Down Syndrome Congress includes more than 130 local and regional organizations as affiliated members. That group includes small start ups and very large associations with decades of experience and thousands of members. They all have at least two things in common – they all started as small group of concerned parents and they offer parents a place and a means to share information, give and receive emotional support, and work as a team to address common concerns.
Typical activities include:
- Hosting social events for families of children with Down syndrome.
- Providing information about Down syndrome to new parents.
- Providing information about Down syndrome to doctors and hospitals.
- Helping new parents navigate the service system within your state.
- Distributing information via newsletters or emails.
- Arranging for speakers on various topics of interest.
- Advocating for rights of individuals with Down syndrome in your community.
- Creating a playgroup for young children.
- Organizing recreational activities for older children.
- Organizing awareness activities for National Down Syndrome Awareness Month in October.
An important function of nearly all organizations is to introduce families to others like themselves, giving them an opportunity to share much needed information, as well as provide support. They can provide a sense of community and understanding; a place where you can laugh about the same things, discuss similar problems, and help each other with current concerns.
We want to help!
From naming your group, to planning your first meeting, to recruiting volunteers to help you, we are here to provide assistance and advice. We wish you much success!
