Thursday, February 24, 2011

Just the Facts, Ma'am...(please, please, please read)

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...


JRS said...

I will be reposting. Thanks for writing this.

Melissa said...

Wow! I didn't know those figures and I have a step-son with CF and now a daughter with DS. I love Bryan and am glad that there is so much allocated to research for his disease, but there should be just as much for Down syndrome.

Michelle said...

It is sad. Last Oct I posted this: which referenced an article Kathy Ireland wrote (she has a niece w/Ds) about the lack of funding for Ds research. Her article was really well-written (and is linked to in my post). That was the first I heard about how low on the totem pole funding for Ds research is from the NIH. Something has got to be done about that. Its one of the most common genetic disorders yet remains at the bottom of the list for funding.

heather said...

Although I wish there was more funding for Ds, I have to admit that I think it is right that CF gets more funding. I can't imagine having a child born with a terminal disease knowing there was nothing that could be done to change that (no chemo, no remission, etc). Morgan doesn't have to fight for each breath and fear that she won't live to be a teenager. She has an amazing life and doesn't suffer or struggle. I'd LOVE for more research to be done to improve her cognition abilities but if funding is limited than I would rather have that funding go to cancer and terminal illness research. My opinion has changed with having my dad recently diagnosed with IPF (a terminal disease with no treatment or cure. A death sentence.) His disease gets $200 funding per person with the disease compared to the $13,000 per person with breast cancer even though the same amount of people are diagnosed with both diseases each year.

Becca said...

I don't think necessarily there should be *less* money funded to the other causes, like CF, I think there should be *more* funded to Ds research. If governments are so concerned with the care of people with Ds becoming such a burden on their budgets, that money would be better spent on cognition research and treatment, allowing for people with Ds to become more independent, hold decently-paying jobs. It ultimately works out in a win-win situation.

Roo's Mom said...

When my daughter was born almost 8 years ago, I remember reading that research being done on how people with Down syndrome responded to drugs that fight Leukemia and Alzheimer's would lead to better treatments for all people facing those diagnoses. I consider that yet another "gift" that people with DS bring the rest of society. I've always thought that the more we put into treating medical conditions common in DS and doing our very best to educate children no matter where their abilities fall on the spectrum, the better off we all are as a community later in life. I do get it that CF is a devastating,terminal illness, and it deserves plenty of research dollars; but improving the quality of life for our kids, and their ability to be active participants in the community when they mature needs to be well-funded too. That said, at least our kids do benefit from research in other areas as well, even it's not under the heading of Down syndrome research.

Csunshinegirl said...

Fragile X even gets more funding from NIH and that is not as life threatening as CF is. I hate to say it but I really think it is because Down syndrome has a VERY poor positive marketing campaign - heck what marketing campaign.

While it's great that DS achieves (or Down Syndrome Achieves - I can't remember) is here, but about the Down Syndrome Research and Treatment Foundation? Sometimes I think there are too many foundations, etc and it isn't focused enough.

Becca said...

I'm loving all of your comments here - thank you for reading and for passing this along!

Another point I need to make here...DSRTF is a great organization, but it *only* funds research.

DSA is the *only* organization that is doing ALL of the following:

*initiating/conducting research

*funding research

*creating research infrastructure

*doing legislative lobbying - state & federal, and increasing federal research funding

*is a grassroots organization

*is a political action organization

Courtney said...

The CF example in your post is misleading. The Cystic Fibrosis Foundation earmarks something like 95 percent of its funds to cure-finding research (my sister worked for the organization for 10 years). So it makes sense that the government would fund this type of research over DS. I'm in no way arguing that people with DS shouldn't receive the same resources as people with other disabilities. DS funding should be about more than medical research. There should be federal funding for public education and advocacy, early intervention, parent support, job training, etc. The medical piece of DS is important, but for CF it's the core of the disease. I would be curious to know how much federal funding goes to DS other than "research."

Linda said...

I have a list of funding allocations that was distributed at the BW on Washington. I'm going to get it and post it on here in a few.

Melissa said...

I missed the webinar (twice!, I sure do have poor organizational skills) but have heard great things about it from others. It is sad that Ds is so underfunded with regards to the overall population size of people with Ds. Hopefully DSA and other organizations will get the research dollars moving in the right direction.

The Sie Foundation is another organization that focus on the clinical side (Ds Clinic) and the research side. They have millions in grants and have just named named the director of the research side at University Hospital. The clinical side is at our Children's hospital. Pat Winders came to Denver because she was so excited to have both the clinical and research parts addressed in pretty much one location. I'm hoping that since this is in our area Claire may be able to participate in some research trials down the road.

Crazy Beautiful Love said...

I want you to know that since you last posted info about the organization I have shared it with everyone I know and plan to put it as the charity of the month on my blog for March. I may even make it my permanent personal charity. That is probably one of the most significant issues I have with my Eslea's diagnosis. Thanks for posting it again.