Thursday, August 21, 2014

The Challenge for all of us is this:

Before I even begin to say what I want to say, let me say this.

ALS research and funding is very important, the people who live with it are indeed very deserving of this incredible and very simple campaign that has raised an astronomical 41.8 MILLION dollars as of today. Wow. Great job.

This young man lives with ALS in a very real way. His emotions are raw, and heartbreaking. It is a devastating disease that has taken so much from so many. And it needs to be funded.

The past few weeks on social media have been astonishingly full of this Ice Bucket Challenge. In fact, my own daughter will participate in one with her cheerleading squad this afternoon. I get it.

But I have a question for you?

Have you ever heard of a Challenge to raise funds for people living with Down syndrome?

Lets compare numbers:

NIH funding for ALS this year is projected to be $40 MILLION dollars. 40 million! That is a lot of money.
Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert. Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year.

As many as 30,000 Americans may currently be affected by ALS.

NIH funding for Down syndrome this year is projected to be $19 million dollars. $19 million is also a lot of money. But it is less than half of what is spent on ALS. Why does that matter? Well, ALS is thought to affect as many as 30,000 Americans. People currently living with it.

Down syndrome? It affects some 400 THOUSAND people!

370,000 more than ALS. Half the funding.

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

There are more than 400,000 people living with Down syndrome in the United States.
Where are our advocates? Why are we just sitting idly by and not doing something? Grassroots, creative, fun, social-media-based. We have GOT to stand up and demand to be heard. NIH isn't going to fund us.

Down syndrome is the least funded major genetic condition by our National Institutes of Health (NIH) despite being the most frequent chromosomal disorder (1 in every 691 babies in the US is born with Down syndrome). The funding for research benefitting people with Down syndrome at the NIH started a continual and precipitous decline in the year 2001. Even compared to other intellectual and developmental disabilities or comorbidities, Down syndrome has been funded anywhere between 3x and 11x less on a per capita basis year on year. It is important to educate our representatives in DC, with the NIH and other federal and local organizations in terms of how basic, clinical, developmental and educational research benefits people with Down syndrome and their families. In order to reverse the lack of funding for people with Down syndrome we must advocate strongly but do so in a spirit of partnership and cooperation.

I have a challenge for those of us who love someone with Down syndrome. SHARE THIS POST! Talk about it. Be respectful, kind, and understanding. We aren't begrudging the folks with ALS and their incredible fund raising ideas. But we DO want to find a way to do this within our own community. We NEED to do this. And we need to raise our voices together and demand answers as to why the most commonly-occurring chromosomal condition receives the LEAST amount of funding.

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