The National Institute of Health wants to know if you want Down syndrome research funding

The NIH has decided to gather info (Request for Information or RFI) regarding an interest in Ds research, data base and bio bank.  They want to receive responses by April 1, 2011, in order to decide if there is enough interest to move in that direction.  We feel this is clearly a move in the right direction and would love for you to send your email of support.  You can write your own or simply modify the wording in the first sentence....As a friend(uncle, relative, etc) of a child with Down syndrome who has five siblings, .....  

FYI, the majority of individuals with Ds start with Alzheimer-like symptoms in their 40s.  This will dramatically impact the entire family and there is currently a human clinical trial being conducted on just this topic.  Of course the majority of funding is through private donations, so to have the support of NIH in funding Ds research more fairly (currently Ds is the most common genetic chromosomal abnormality, yet it is funded by far the lowest) hopefully more breakthroughs will be found to improve cognition and delay the later loss.


 If you do write an email please send to:   dsrdrfi@mail.nih.gov and cc: nihresponse@globaldownsyndrome.org   with subject:  RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI

Please pass along to anyone else who may be willing to send an email. 

Our children deserve research!

New treatment to help those with Down syndrome!

Great new research to help cognition in  those with Ds. This is what Dr Mobley described in his talk at Cold Spring Harbor Labs last spring.
Read the article from Reuters here.
Update 11-21
Yet, updated medical research is still being used to destroy our children rather than save their lives. Read this article at MercatorNet on how pre-natal diagnosis leads to eugenics.
"If Down syndrome, a series of conditions that are amenable to both life and happiness, is considered unacceptable, what then of other "problems"? In a society obsessed with so-called health, the outcome seems predictable. For those of us who are uncomfortable with or disagree with the laws on abortion, do we have to stop using a wonderful diagnostic tool for fear that it will, literally, fall into the wrong hands? Or is this a good moment for declaring a moratorium on ante-natal diagnostics and re-opening the abortion debate? "
I say re-open the abortion debate, we know so much more in 2009 about pre-natal development than we did in 1973, in fact Blackmun himself commented that a deciscion to grant Personhood to the unborn would nullify this decision.

Down Syndrome Caucus secures research money!

On April 27, 2009, I, along with the other members of the congressional Down syndrome caucus, wrote to the National Institutes of Health (NIH) expressing concern with the lack of funding for Down syndrome research. (You can read that letter here.)

In particular, we requested NIH triple its funding to Down syndrome research, especially in light of additional funding made available from the stimulus package. We felt NIH’s response to our letter was inadequate and requested an in-person meeting to discuss their commitment to Down syndrome.

As a result, a week ago today, Dr. Yvonne Maddox, Deputy Director, of the Eunice Kennedy Shriver National Institute of Child and Human Development (NICHD), briefed me and the other caucus co-chairs on NICHD’s funding priorities. I was extremely pleased to hear NICHD reaffirm its commitment to the short and long term goals set forth in the 2008 Research Plan on Down syndrome, particularly through NICHD’s commitment to future funding announcements for Down syndrome research over the next five years.
Equally exciting, as I mentioned above, was the long-awaited introduction of the Trisomy 21 Translational Research Parity Act of 2009, which I sponsored, together with Congressman Patrick Kennedy (D-RI) and Congressman Pete Sessions (R-TX). This bill is critical to ensuring Down syndrome research remains on par with the research infrastructure of other diseases.
In 2000, the Children’s Health Act amended the Public Health Services Act in a number of ways, including by authorizing research and surveillance for a number of conditions and disabilities such as juvenile diabetes, Fragile X, asthma, and epilepsy, autism, and traumatic brain injuries. However, the amendments did not authorize the research and surveillance of Down syndrome.
The Trisomy 21 Translational Research Parity Act of 2009, will bridge the critical gap that currently exists in Down syndrome research between basic medical research and cutting edge clinical trials. The bill will recognize at least six Centers of Excellence around the nation that will be dedicated to conducting translational research as well as create the much need biobank and registry to assist with the Down syndrome translational research program.
More than 400,000 individuals have been diagnosed with Down syndrome (also known as Trisomy 21). The extra chromosome causes varying degrees of intellectual disabilities as well as physical abnormalities. As a result, those with Down syndrome also have a number of other medical conditions, including: Alzheimer’s disease, autism, and other neurological and psychiatric disorders. I believe the funding opportunities confirmed by NICHD this week as well as the research infrastructure authorized by the Trisomy 21 Translational Research Parity Act of 2009 will not just benefit individuals with Down syndrome but the millions people with other conditions and diseases.
While we have a long way to go, I believe last week represented a turning point in our efforts. I look forward to continuing working with the disability community to ensure funding and infrastructure remains a priority here in Congress.
Bravo Representative McMorris Rogers!!!
She is the best friend the Down syndrome community has in Congress. She is pictured here with me, Eileen Haupt and other members of Keep Infants with Down Syndrome.
Now exciting research projects like those of Dr William Mobley of the Down Syndrome Research and Treatment Foundation can get the required funding they need to move forward. Maybe someday, there won't be a 90% abortion rate for children with Down syndrome, once we can give hope to parents from this promising research.

Newsweek gets it right

According to Granny Grump, Mary Carmichael at Newsweek has written an article on the new screening for Down syndrome which laments the fact that improved screening means more deaths of worthwhile people. Amazing! She gets it!
Now, I'm going to look up that article online. . .HERE it is! Read it and weep for joy!

New website to obtain firsthand medical resarch information

This website is from the National Insitute of Health. It offers firsthand access to the latest medical research, so parents can access new information for our children without waiting for the media.

My first article in the National Catholic Register

Is a compiliation of the latest research being done for treatment of Trisomy 21 or Down sydnrome. I also mention the crucial discovery of the cause of Trisomy 21 by my patron saint, Dr. Jerome Lejeune. It's entitled, Down, Not Out.