Everything Starts at Home

As an example, let me tell you about the Ds group in my city, the Down Syndrome Alliance of the Midlands. As of two years ago I knew nothing, really, about what they do. So I called and...
- Legislation on both a national and local levels is a top priority for the current board. The president of the local org is articulate and passionate and she backs this up with a bit of muscle.
- Efforts are made bring together families to support one another, via events and online groups.
- The local org pursued and attained grants to bring more education and top experts from around the country into our city to teach and discuss. This is offered free to families. This is HUGE to me.
- Membership is FREE. (Of course the organization has fundraising and monetary needs, but this no one is left out due to financial limitations.)
Why the Local DSA is So Important
But let’s not stop there. It’s more than just serving the parent OR the individual with Down syndrome. It’s serving the educators, the medical professionals, extended family and the community. A well-run DSA can be so much more than just the first call when a baby with Down syndrome is born. It’s ongoing, lifetime support and resources. It’s friendly faces and opportunities to gather, learn and share with others. Which reminds me a little bit of what Down Syndrome Affiliates in Action is all about…
DSAIA is there for the local DSA just as they are there for their members. We’re here to be that friendly face, that source of information and support. We are here to connect group leaders to others who can share experiences and information. And, I have to tell you, it’s kind of amazing. Of course, we’re the friendly faces who are here for groups…and we’re happy to listen and offer support. However, the support comes in the form of training in the areas of nonprofit governance and operations. It comes in the form of information about effective programs, new technology and tools and ways to save or raise funds.
- Deanna Tharpe
It took 24 years for me to contact my local DSA group. This doesn’t mean they weren’t bringing value to the community before, it means that then wasn’t the time for us to participate and now is. If you have questions about your local DSA, I strongly suggest going to call and arrange to chat in person.
If you are given the time and answers, that is a great beginning. Tell them your needs, priorities and concerns. In many cases, there will be overlap. On any area that they don’t yet have resources or a plan in motion, they may know other connections to help you. And most importantly, you have told them what you and your family needs, a DSA cannot know this until you tell them. (It’s only fair.)