Research and Fundraising

1 in 691 births in the United States are affected by Down syndrome, making it the most frequently occurring chromosomal condition.

More than 400,000 people in the U.S. have Down syndrome. It is estimated that 5 million people worldwide have Down syndrome.

Despite its frequency, Down syndrome is the least funded of the conditions serviced by the National Institutes of Health receiving approximately $17 million out of a total $28 billion budget.

More than 50 percent of those with Down syndrome will experience the early onset of Alzheimer’s. People with Down syndrome have an increased risk for certain medical conditions, including far higher rates of childhood leukemia, heart defects, severe digestive tract issues, and sleep apnea. Moreover, research indicates the incidence of Alzheimer's disease in people with Down syndrome is estimated to be three to five times greater than that of the general population, which according to the Alzheimer’s Association is now estimated to be 5.4 million people. 

See more at: http://www.ndss.org/Advocacy/Legislative-Agenda/Improving-Health-Outcomes-Quality-of-Life-for-People-with-Down-Syndrome/Down-Syndrome-Research-Funding/#sthash.xabT91jH.dpuf

While there is no cure for Down syndrome, there are research trials that are finding ways to deter the affects of Ds like Alzheimer's and cognition improvements.

I'm still not sure how I really feel about a "cure" and what that means. I don't want to change anything about Lb. She is perfect just the way she is. Now, would I want to shield her from Alzheimer's and childhood leukemia? You betcha! Doin want to give her all advancements and opportunity possible for a full and independent life? Absolutely. 

But at what cost? Will she still be herself? Will these "cures" have long term effects? There are a lot of questions that still need answers and the only way to get those answers is by research. Research that needs finding to make it happen. 

Just 20 years ago, the idea of having someone functioning in society with Ds was still pretty new. Sure, it sounds like a long time ago but let's get real... you and I were both probably still secretly rockin new kids and snoop was just finding his g thang.  It's like yesterday really. And the life expectancy of a person with Ds was only 25. 

See how far we've come? Now think about how far we can go?

Until next time..

Shona