Saturday, April 23, 2011

Supporting Cognition Research via plus15

Sharing our personal stories, photos, and videos has raised awareness about Down syndrome. We hope you, our dear readers, have enjoyed following along as much as we have enjoyed sharing and meeting friends on this journey. Thanks for your friendship and encouragement. Thanks for reading!

Please consider helping us make a bigger difference in this world through the plus15 campaign. By supporting biomedical research to improve cognition, including learning, memory, and speech, by 15 percent, you will give Matthew and our friends with Down syndrome, more opportunities to full inclusion - academically and socially - and independent living as adults.

Our involvement in plus15 has a two-fold benefit. This fundraiser is a contest. The top fundraiser will receive an Apple iPad. IF we win, we will donate the iPad to Matthew’s preschool. Your contribution could help more children with special needs, such as Autism, who can benefit from its use during their therapy time. Please help us win the iPad for the kids!

We really appreciate your interest in helping!

Facts to Consider
Studies show that the life expectancy of someone living with Down syndrome has increased from 25 years to over 50 or 60 years over the past 3 decades. But cognitive abilities have not improved at a similar pace. Current advances made in cognitive research are promising of positive change, such as avoiding the early onset of Alzheimer’s disease. The National Down Syndrome Society (NDSS) cites that “25 percent or more of individuals with Down syndrome over age 35 show clinical signs and symptoms of Alzheimer's-type dementia. In the general population, Alzheimer's disease does not usually develop before age 50.”

Federal funding for Down syndrome research is only $55 per person. That's about 95% less on average than what the government spends on research for similar disabilities. A big chunk of federal funds goes to research to develop more tests to merely detect Down syndrome prenatally, instead of toward cognition research. We have collated data in the following tables as gathered from the sources listed below.


2008-2010 NIH Funding for Various Medical Conditions
CONDITION US POPULATION (est) 2008 NIH FUNDING Million $ 2009 NIH FUNDING Million $ 2010 NIH FUNDING Million $
Cystic Fibrosis 30,000 90 86 86
Parkinson's 1,500,000 152 162 154
ALS 30,000 43 43 47
Huntington's 30,000 51 57 65
Multiple Sclerosis 400,000 169 137 133
Crohn's Disease 400,000 51 55 66
Down Syndrome 400,000 17 18 22
Fragile X 17,000 26 27 25
Autism 560,000 118 132 160
Duchenne MD 45,350 22 27 33


2008-2010 NIH $ per Capita Amount for Various Medical Conditions
CONDITION US POPULATION (est) 2008 NIH $ per CAPITA AMOUNT 2009 NIH $ per CAPITA AMOUNT 2010 NIH $ per CAPITA AMOUNT
Cystic Fibrosis 30,000 3,000 2,866 2,866
Parkinson's 1,500,000 101 108 103
ALS 30,000 1,433 1,433 1,567
Huntington's 30,000 1,700 1,900 2,167
Multiple Sclerosis 400,000 422 343 333
Crohn's Disease 400,000 128 138 165
Down Syndrome 400,000 40 45 55
Fragile X 17,000 1,529 1,588 1,471
Autism 560,000 211 236 286
Duchenne MD 45,350 485 595 728
Sources:
2008 data from Dr. Brian Skotko’s testimony before the Down Syndrome Congressional Caucus in February 2009 (http://www.brianskotko.com/images/stories/Files/down_syndrome_congressional_caucus_feb_09.pdf) as provided by M.M. Harpold, DSRTF based on 2009 NIH Data (http://report.nih.gov/rcdc/categories/).
2009 & 2010 data sourced and adapted from 2011 NIH (National Institutes of Health: Estimates of Funding for Various Research, Condition, and Disease Categories) http://report.nih.gov/rcdc/categories/Default.aspx. Note that I calculated the 2009 and 2010 NIH $ per capita assuming unchanged population estimates from Dr. Brian Skotko’s 2008 data.

3 Possible Ways to Donate
To donate online, please click on Matthew’s photo below. Any amount would be helpful and appreciated.
Click to donate
Our fundraising page will open in a new window where you can donate online. Donations can be made anonymously, if you choose to do so. Online donations will be accepted until May 21, 2011. (Please be aware that this fundraising site automatically allocates 10% of the donation amount as a tip. Tipping the fundraising site is not necessary. You can select the option not to tip in the drop down menu before confirming your donation.)

If you would rather send a check, make it payable to "Down Syndrome Research and Treatment Foundation" and write "Bill and Ria" on the memo line. Please contact us so that we can send you more details. Check donations are accepted until May 14, 2011 because we have to get them to the DSRTF by May 16, 2011 in order for checks to count toward our total.

Donations are tax-deductible.

If you would rather donate a few minutes of your time, please share this post with friends on facebook, twitter, or on your blog, if you have one.

Thank you very much for your generosity and helping us spread the word! Your support of this great cause means a lot to us, especially to Matthew.

The link to our fundraising page is http://www.crowdrise.com/plus15/fundraiser/billandria.

Grab the button below for your blog.

Bill and Ria's plus15 page


Thanks again for your support of this great cause, and thanks for reading!

About plus15
+15 logo
plus15 is an initiative of the Down Syndrome Research and Treatment Foundation (DSRTF), a non-profit organization funding cognition research. When you give to the plus15 campaign, 100% of your money will go directly to funding cognitive research at major research centers around the country, including Johns Hopkins Medical Center, Stanford University, University of San Diego and University of Arizona.

Here is a short video made by the DSRTF:

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