Thursday, February 24, 2011

Repost: Disparity in Research Funding for Down syndrome

The following post was written by my beautiful friend Becca who can be found at The Bates Motel blog.

Many of you know lots of facts about Down syndrome. I like to think I do, too. But this week I learned some facts that I didn't know before, facts that truly astounded and shocked me, facts that left me feeling sad and frustrated, but also energized and motivated. Motivated to try to rally the troops, those legions of you with loved ones with Ds, to do something so that my daughter, Samantha, the love of my life, can have a longer, healthier, more productive life.

1 in 691 live births is a baby with Down syndrome. I bet that's a fact that you already knew.

An average of $42 in Federal funding is given per person with Ds (there are @400,000 in the US) for research, compared to the $3,000 per person with Cystic Fibrosis (there are @30,000). I bet many of you didn't know that one, although I posted it a few weeks ago.

Really, I could spew facts and numbers till the cows come home, but I honestly don't want to lose you on this. This is too important.

Why such a disparity? Perhaps a person with a cognitive disability is viewed as less of a person than someone with a physical disability. Valued less. Worth less.

Samantha is not worth less.

Ds researchers are able to come up with solutions to the issue of cognition, but they don't have the means. It overwhelms me to think that there could be a solution in just a few short years that will make a tremendous difference to Sammi. But without major Federal funding, this won't happen. We're so close. It's a no-brainer, really. But why can't we get the backing we need to do this?

Down Syndrome Achieves is an organization dedicated to community support, advocacy, research and lobbying for legislative reform and federal funding for Down syndrome research. Yes, there are many organizations out there that support families and research, but after more than 40 years of plugging along, there still has been no truly organized effort to join forces and no basic infrastructure to really get things done. DSA seeks to do just this, and are off to a flying start, with the joint support of several well-known research hospitals and others in a position to influence the folks that make these funding decisions. Please visit their website,, join their mailing list, help to unite our scattered Ds organizations for the one cause we hold so near and dear to our hearts, making lives better for our children.

I'm not asking for money (although if you happen to have a cushy pocket of disposable income, it might be nice...).

I'm asking for strength in numbers and for you to spread the word, through your blogs, through your tweets, through Facebook, through phone calls and e-mails to your local Down syndrome associations to get involved. Feel free to share this post. There are so many of you out there with connections. Please reach out and use them.

At a DSA webinar last week, I learned that there are 170 groups with Federal funding ahead of Down syndrome, including tobacco and alcohol cessation programs. Why?? Counselling can often help someone with an alcohol or tobacco addition. Counselling will not help someone with Down syndrome. Yep, I just had to get that one last fact in here...

1 comment:

Becca said...

Thank you so much for reposting that, Jen!!! ((hugs))

I actually felt really, really emotional and got teary writing that and reading it back. It's such a *simple* solution, but at this point we have to get all the pieces lined back up and working together. So many cogs in this wheel...