Wednesday, February 22, 2012

The Waksmunski Family: $20 Million - Really??

The Waksmunski Family: $20 Million - Really??: The National Institutes of Health (NIH) has stated that $20 Million was spent in 2011 on research funding for Down syndrome. WOW, Thank yo...

$20 Million - Really??

The National Institutes of Health (NIH) has stated that $20 Million was spent in 2011 on research funding for Down syndrome.  WOW, Thank you!!  Again, that was $20 million in research funding for Down syndrome.  That is a lot of money, right?  Hmmm, maybe not.
The total budget, as released by NIH, in 2011 was $31 billion.  That’s correct, $31 billion.  The $20 million in funding for Down syndrome is less than 1% of the budget for NIH in 2011.  Down syndrome is the most common genetic disorder caused by a chromosomal abnormality yet it is the least funded genetic condition funded by the NIH.  Shane and Wyatt will be 2 years old next month and our medical costs are closing in on $4 million.  Wow, $20 million in research funding?  People with Down syndrome have an increased risk of developing a number of medically significant problems; respiratory infections, gastrointestinal track obstructions, heart defects, hearing loss, hypothyroidism, eye abnormalities, childhood leukemia, and Alzheimer’s.    They also exhibit intellectual disabilities, in some cases severe; children with Down syndrome usually develop more slowly than their peers and have trouble learning to walk and talk.  Research funding is important and needed.
There have been breakthroughs in research as an individual with Down syndrome born today has a much longer life expectancy than 20 years ago.  Today about half will live 50 years or longer.   Physical and speech therapy has improved and along with screening for common medical problems associated with Down syndrome followed by corrective surgery can often improve the quality of life.   
With that being said, so much is not known or is being currently researched.  What causes the extra copy of chromosome 21?  Having an extra copy of chromosome 21 results in more protein being produced and research is currently underway to better understand this process.  This research could lead to improvements in cognation for individuals with Down syndrome. 
$20 Million?  In the United States there are approximately 400,000 individuals with Down syndrome.  That means the NIH will spend $50 per person on research.  Since 2000, research funding for Down syndrome has plummeted.   This means $100 in research funding for my boys will be spent to hopefully better their lives and cognitive skills.  Hmmm, that $20 million doesn’t sound like so much money anymore and less than 1%, actually 0.6% sounds worse.
The Shane and Wyatt’s Down Syndrome Foundation, while grateful for the funding that is currently available for research, is disappointed that the National Institutes of Health has continued to decrease funding in the area.  We will support the National Down Syndrome Congress, National Down Syndrome Society, Global Down Syndrome Foundation and the Down syndrome community who will continue to fight for increased funding for research that will benefit the lives of individuals with Down syndrome.