World Down Syndrome Day

My boy Nub has Down Syndrome. Read The Nub of the Story for my conversion on this topic. I've got some pretty strong feelings on the matter.

I won't give a dime to the National Down Syndrome Society because they refuse to affirm the dignity and worth of DS children prior to birth. Their attitude is symptomatic of the public at large.

Mark W. Leach at Public Discourse uncovers some of the reasons why.

Each year, March 21^st is World Down Syndrome Day (WDSD). The date 3/21 was chosen as a representation of the genetic cause of the condition, a triplicate of the 21^st chromosome. WDSD seeks to raise awareness of a genetic condition that may very well diminish to the point of disappearing. This is due to the prenatal testing sham.

Read the whole thing here.

Research DS: Revolutions

Interesting. Spirit Juice Studios has a video promoting Research Down Syndrome (RDS).



From the website ResearchDS.org:

Research Down Syndrome (RDS) is a non-profit foundation that supports Down syndrome cognitive research, an area that in the last 5 years has experienced great advances towards developing biomedical therapies to treat the cognitive impairment of people of all ages with Down syndrome. The potential of these treatments to address Down syndrome cognitive dysfunction is tremendous - improving memory, learning and communication – and expanding and enhancing life opportunities for these individuals.

Until recently, the medical and research community considered the cognitive impairment associated with Down syndrome to be too complex to understand, offering no hope for the development of treatments. Now scientists have identified unique biological mechanisms associated with cognitive dysfunction in Down syndrome, suggesting the promise of targeted biomedical therapies that could lead to improvement in the intellectual difficulties experienced by those with Down syndrome.

In recent decades, improved health care, expanded educational and community opportunities, and the support of families and advocacy groups has improved the quality of life for individuals with Down syndrome. As a result, the life expectancy of those with Down syndrome has more than doubled -- underscoring the importance of development of treatments that will assist this population to achieve and maintain independent living. We believe that individuals with Down syndrome should have access to effective drug therapies in a manner consistent with many medical conditions.

Research Down Syndrome(a 501(c)(3) approved foundation) will support world-class scientists with the goal of continuing these revolutionary advances. RDS, through personal contributions and the support of friends, has already raised hundreds of thousands of dollars to support Down syndrome cognitive research. This support and RDS’ low administrative costs ensure that 100% of all contributions go directly to research.

Cure Cancer By Game Playing?

This is a bit novel: games with real-life purposes and applications. A team of biologists have created a game called Fold It (at the equally clever domain name fold.it).

David Baker, a Howard Hughes Medical Institute researcher at the University of Washington, designed a game that uses human intuition about puzzle solving to help predict how proteins fold. Proteins are key players in both diseases and developing cures.

What big problems is this game tackling?

• Protein structure prediction: As described above, knowing the structure of a protein is key to understanding how it works and to targeting it with drugs. A small proteins can consist of 100 amino acids, while some human proteins can be huge (1000 amino acids). The number of different ways even a small protein can fold is astronomical because there are so many degrees of freedom. Figuring out which of the many, many possible structures is the best one is regarded as one of the hardest problems in biology today and current methods take a lot of money and time, even for computers. Foldit attempts to predict the structure of a protein by taking advantage of humans' puzzle-solving intuitions and having people play competitively to fold the best proteins.
• Protein design: Since proteins are part of so many diseases, they can also be part of the cure. Players can design brand new proteins that could help prevent or treat important diseases.

A human protein (+) Enlarge This Image

How does my game playing contribute to curing diseases?

With all the things proteins do to keep our bodies functioning and healthy, they can be involved in disease in many different ways. The more we know about how certain proteins fold, the better new proteins we can design to combat the disease-related proteins and cure the diseases.

I suppose it is a little like SETI@home in that it is using voluntary distributed processing to work on difficult problems, but unlike SETI, this might have more practical applications closer to home.

Supposedly all the resultant work will be in the public domain and not just the intellectual property of some mega-biotech firm, but time will tell. One guy has already folded a protein that might be a good anti-influenza form.

One of the troubling aspects of all the research that is getting done these days is the lack of ethics and moral restraint accompanying it. (Yes, I know that ethics can mean whatever you want it to depending on your starting point, but in this case I mean Judeo-Christian/natural law type ethics). "Science" is running far ahead of its ability to keep a moral framework around it.

Case in point: a friend of mine says he rarely contributes to fundraisers and Walk/Run/Race for the X cure, because the money raised to "find a cure" frequently turns into "a genetic test for X abnormality in utero and subsequent abortion". Instead of curing the disease, they are preventing the disease from troubling society by preventing that person's birth.

This has apparently happened with organizations like the March Of Dimes, UNICEF, and the Komen Foundation.

As helpful as many [Down Syndrome] support organizations can be to parents of children with DS, some of the largest ones have abdicated any responsibility for reducing abortions of babies with birth defects. The March of Dimes, the National Down Syndrome Society, and the National Down Syndrome Congress all take a neutral stance on abortion, ostensibly because they don't want to judge or to tell anyone what to do.

However, a neutral stance on abortion is not a neutral policy. It implies that the killing of these innocents is in the best interests of society, and can therefore be justified. Instead, these organizations need to take a stand in defense of all babies with Down syndrome, born and unborn.

They could have an unparalleled influence on the current situation by putting a positive face on these unborn babies, whose humanity and inherent value to society shine through at the moment of birth. There is no telling how many precious lives could be saved if they did. [source]

These are all things to ponder and think about. In the meantime, you could solve a puzzle by Fold It.

Heartless Couple Of Down Syndrome Baby Sue Doctor

Oregon is a strange place; being the home of assisted suicide, it's not a far stretch to see how they got here.

[W]ithin days of the birth of their daughter, Deborah and Ariel Levy learned the baby did have Down syndrome. Had they known, they say, they would have terminated the pregnancy. Now they're suing in Multnomah County Circuit Court, seeking more than $14 million to cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter, who turned 2 this month. The suit also seeks money to cover her life-long living expenses.

The Levys declined to be interviewed. Their attorney, David K. Miller, said the toddler is as dear to them as their two older children but they fear being perceived as "heartless."

News flash -- you are heartless. Anyone who can say: "we love our little darling, but we'd have killed her if we'd known" is by definition a selfish, heartless person.

If you'd like a little heartless, how about considering that a) no medical test is ever 100% reliable and you have no expectation of such; you could have gotten a second opinion -- later tests indicated positive; and b) the genetic defect that resulted in your daughter's condition came from you -- maybe you should be sued for causing it.

I'd like to sue you for impersonating people with consciences.

Now for the record: my son (Nub) has Down Syndrome; my other four children don't. I never, never, ever, for one moment blamed anyone else for that happening. Not once. Maybe a little "why me?", but no blame of God, me, her -- or the doctor for crying out loud!

Doctors aren't omniscient. Tests are not always conclusive. Life. Just. Isn't. Fair. Get used to it, and quit looking for a handout.

Best Feeling In The World

Yeah, I know this one has already made the rounds in the blogosphere, but it's just that good that it deserves to be re-posted. (Hat tip: HotAir via Creative Minority Report)


Update: CNN is having trouble with the video, but the original can be found on KSBY.com 6 Action News at http://www.ksby.com/Global/story.asp?S=9790023