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A New Era in Advocacy for Down Syndrome

Posted Feb 03 2011 12:00am

By driving innovations in research, education, and political advocacy, we will assure that individuals with Down syndrome can lead meaningful and fulfilling lives unhindered by preconceived limitations. From birth through adulthood, we can level the playing field for those living with Down syndrome.Expanding the horizons for people with Down syndrome begins with expanding our own conception of what can be achieved.
It’s time for us all to re-imagine the possible.

Every child is born with a unique heart, spirit, personality and potential, and each one will enrich the world with new possibilities.

Every child. Whether that child has a diagnosis or not.

As the parent of two children with Down syndrome, I am particularly invested in making sure they are offered the same opportunities as everyone else, and that they are also able to share their gifts with the world.

Among parents and advocates, there is a growing feeling that we could be doing more for our children and loved ones with Down syndrome.

While recent years have seen some advances in the medical, educational and social arenas relating to Down syndrome, we're realizing that there is much more to understand and do.

We haven't done enough.

And it is not from a lack of people who care, or from a lack of the desire and will to step forward and make a difference.

I believe we're all trying to make a difference by working to understand what is available to help our children and then also working to get those things. Many of us are advocating strongly for our children in medical, school and social settings, while we are also volunteering with our local Down syndrome chapters, or blogging, or taking part in a fundraising walks for Ds.

Often, we're as busy raising money and awareness for the cause, as we are raising our children.

In the last five to ten years, we have seen a new focus on understanding Down syndrome, and several new research-oriented initiatives and organizations have popped up.

But it still isn't enough.

The numbers don't lie. As a movement, we have crawled rather than zoomed. Other special interest groups have run circles around us. While other groups are initiating (and completing) research studies to propel their causes forward--and are being well-represented in state and national government settings--we are not.

We have failed for decades to make significant advances in understanding Down syndrome from a scientific perspective, and we are getting passed up for federal funding and research grants because we're not sitting at the table when they are handed out.

Year after year, millions of federal dollars are going to other health or disease research areas, making Down syndrome one of the least funded research programs at the National Institutes of Health. There are 170 different research programs funded ahead of Ds, even though Ds has a larger impacted population and incidence rate.

The problem is not passion or concern, it is a lack of vision and coordination. The solution is a grassroots effort to re-energize the Down syndrome movement.

And it is underway.

There are so many acronyms and groups swirling around, that it can be very difficult to understand who is doing what, and which groups are working together.

There are primarily awareness-based organizations and primarily research-based organizations. You may have heard of groups like NDSS, NDSC, DSRTF, DSR, and GDSF who are all seeking change and a better life for people with Down syndrome.

Each of these organizations has had its own positive impact, yet not one of these groups has a firm plan to spearhead both scientific discovery and legislative action on behalf of people with Down syndrome (both of which are necessary to see the kind of progress we envision and desire).

Enter DownSyndrome Achieves , the first Down syndrome organization of its kind. DownSyndrome Achieves has a plan, and the real power to take us all forward. This organization is poised to make a significant impact in the lives of people we love. 

This is the real deal, and I know this because I have watched DownSyndrome Achieves grow from a small, local group operating with a strong directive, to a vital force in the national Ds landscape.

A recent comment on a babycenter Down syndrome message board said, "Let's throw our support behind one of these groups and make our voice known."

We all need to realize that, together, we can make a huge difference. We need to be united under one umbrella, so we can ask for--and expect to see--a more level playing field for our children and loved ones with Down syndrome.

DownSyndrome Achieves is that umbrella.

This is an exciting time for all of us. But we can't just sit around and hope things will change. We're going to have to work for it. Who will join me?

Take some time to learn about the current state of Down syndrome research and advocacy and what is being done to move it significantly forward.

There is a Web Conference tonight that will cover this information in depth. If you care about the future of people with Ds, you will want to hear it. You will be blown away.

Participants are already scheduled to join from all over the country, and there are only a few spots left, but you can still register here until capacity is reached. If you do get closed out, there will be another presentation of this information in the near future (and I will post details here, as well as on facebook).

This presentation is both powerful and compelling. Plan to attend and learn how you can help.

For our voices to be heard, we have to speak clearly and loudly. 

Let's do this!
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