Millions will go into creating institute for Down syndrome
September 23rd, 2008From the Denver Post, Rocky Mountain News and 9News-TV in Denver:
Retired cable television executive John Sie and his wife, Anna, have announced a commitment of $34 million to create the best research facility in the world to study Down syndrome. The Sies are grandparents to five-year-old Sophia, who has the condition.
The institute will be located at the University of Colorado’s Anschutz Medical Campus in Denver, and will be a combined venture involving CU and Denver Children’s Hospital.
“Four and a half years ago, we found our life mission when we knew Sophia was going to be born with Down syndrome,” Sie said of himself and his wife, Anna.
Neurologist William C. Mobley will serve as the executive director of the Institute. Mobley most recently served as Chair of the Department of Neurology and Neurological Sciences and the Director of the Center for Research and Treatment of Down Syndrome at Stanford University.
Mobley said eradicating the effects of Down syndrome is a worthy goal, but he tempered expectations a bit.
“That bold position is something we should aspire to,” he said, but added he was more comfortable with the idea that in 10 years scientists will understand a lot more about what can be done about the most negative aspects of the disorder. “We’re going to be hopeful and realistic at the same time,” he said.
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September 24th, 2008 at 2:00 pm
Sally, you have been a special education teacher for thirty years too long. My son is 7 months-old, and hope to God that teachers like you are long gone from the education system. I wonder what you will say when a blood test is able to detect autism and that population begins to be aborted. Once we can ‘weed’ all of these children, then we can put our money to more pressing problems? You are a disgrace to your profession.
September 24th, 2008 at 9:48 am
I wonder if Sally has asked herself exactly why there are so few children with Down syndrome? Does Sally know that 90% of children prenatally diagnosed with Down syndrome are aborted?
What if there were a test for children with autism? What if they were aborted too? Then we wouldn’t need to spend any money on autism research either.
What if we could find out which children were going to have juvenile diabetes and eliminate them too? More savings!
And how about getting rid of those kids who might have ADD? Kaching!
I hope, Sally, that you will realize that finding out prenatally which children will have Down syndrome and then aborting them is hardly a solution. Shame on you.
September 24th, 2008 at 6:31 am
Sally’s comments are exactly what we have to fear in the coming years, which makes it all the more imperative that we aggressively support funding, especially with our own dollars, for Down syndrome research. Yes, there are fewer children being born with DS — because they are being aborted. Next year, there will be a new blood test for confirming DS in the womb, early and definitively. In my opinion, this will result in a decimation of the in-coming DS population.
Attending a meeting for the DSRTF last month, a parent expressed his fear that research funding may be more jeopardy because DS may be treated like Polio — an issue that has been “dealt with” — so why do we need to fund research to ameliorate its impact? The difference is that Polio for the most part has been eliminated — the disease itself, not the population. With DS, it is the population continually being destroyed, not the DS itself. As a parent of a child with DS who received a prenatal diagnosis, the lack of information — and the lack of hope- given to expectant parents is alarming.
Regardless of the impact on the incoming population, we have an existing population living longer and longer — they will benefit greatly from research. For parents making very difficult prenatal choices, research and its end product, effective treatment, could at least in the future lead to avoiding that painful decision to end a pregnancy. DS research also holds potential benefits to people with cancer (people with DS have a lower incidence), people with Alzheimer’s, and other issues involving genes along the 21st chromosome.
Perhaps because Sally has had so little contact with people with DS, she has deemed this issue “less pressing” — and there lies one of the huge impacts termination has on the DS population, in addition to a number reduction. For many readers of Patricia’s blog, Sally, who love individuals with Down syndrome, this research is pressing, and as important as many other issues impacting DS in specific and disability in general. But Sally’s views may be why NIH funding for DS research continues to decrease per person impacted — in drastic contrast to other well-known health issues. It also means that the DS community needs to become educated on these funding disparities quickly and be ready for a fight.
September 24th, 2008 at 6:26 am
This new institute will study a lot of health and development problems, none of these individual problems are unique to Down syndrome. But in Down syndrome they happen together. Thats what a syndrome is and thats what the word means. Will anyone really contest the need to do more research into Leukemia that is 20X higher occurance in children with Down syndrome? Perhaps we need to know why these children are more at risk and then we will know why Leukemia happens to any child? Then find a way to prevent this risk. There is a higher incidence of a lot of illnesses in Down syndrome, if we knew why, we might know how to prevent all these diseases. In the adult population with Down syndrome there is a much higher incidence of Dementia and Alzheimer’s. Almost a 100% risk in the 50′s compared to 10% risk in 70′s for the general population and we know the risk for us is much greater the longer we live. If we understood why the risk is higher for people with Down syndrome we might find a way to reduce that risk in those who have Down syndrome and also reduce our risk at the same time. This population is not a different species or from another planet they are our children and they carry our genes. They have copies of just a few more normal human genes and thats enough to make their lives at risk and their memory to be impaired and their brain function impaired. We had better hope this wonderful new Down Syndrome Institute in Denver can find answers to these problems because these are problems that affect all the human race including you and me.
September 23rd, 2008 at 11:22 pm
@ Sally,
How insulting.
Why not make this kind of investment into the Down syndrome community; especially since it is private money and obviously near and dear to the hearts of the donors?
September 23rd, 2008 at 5:11 pm
I would like to comment on the last comments. The declining birth rate of babies with Down syndrome is all the more reason for the establishment of a new research institute for Down syndrome. The knowledge that Down syndrome is worth these millions will give new and prospective parents hope for the future. I think this will have a positive effect on birth rates. As parent of two children with DS, am delighted with this news.
September 23rd, 2008 at 3:17 pm
Why put all those millions into an Institute for Down syndrome?
I have been a special education teacher for almost thirty years and I fondly remember my early classrooms full of children with Down syndrome. This school year I have the first student with Down syndrome in 6 years!! We don’t need to put money into this type of research. There are certainly more pressing problems in the world of disabilities.