Pamela Wilson, Special Needs Children Editor of the Bella Online website, which bills itself as the second-largest women's website in the world, offers a link to Down syndrome advocacy on Twitter, and further thoughts on our discussion of whether Down syndrome needs a "cure."
We really don't know what choices we would make if a safe, effective “cure” was developed for the range of intellectual disability found in most individuals with Down syndrome. Looking at the history of 'treatments' for children with Down syndrome concocted in the past quarter of a century would make any parent hesitant to embrace a new version of what 'scientists' call a cure. The thought of giving pharmaceuticals of any kind to newborns, young babies or children is distressing to most parents, especially since those being considered in current research are known to have serious side effects in teens and adults. Previous treatments with supplements considered helpful by sales representatives have not been shown to be effective. It’s likely that any “cure” will have one or two false starts — as one dad mentioned, these are probably the same folks who once thought LSD was a great treatment for people with schizophrenia. Most parents of individuals with Down syndrome do not share a culture of disability with their sons and daughters.
Continued after the jump
02 December, 2009

Previous posts questioning the efforts to "cure" Down syndrome begin here and here. Tora Frank of Madison, Wisconsin, whose daughter Asha has Down syndrome, offers a different view: I would be eager to provide my daughter with a medication that could help her to learn more quickly, struggle less with everyday tasks, communicate better with those around her, make her needs known, allow her more independence. No, not eager—I would be *frantic* to do so. But is that assertion a comment about how I value my daughter? Am I somehow saying that I want her to be different—or that...

27 November, 2009
Josh glasses-csThis thread  (starting here and here) questioning efforts to "cure" Down syndrome began with a quick email from Jenn Power, community leader at L'Arche Cape Breton, mother of identical twins with Down syndrome, and—disclosure—Contrarian's daughter-in-law. At Contrarian's request, she has elaborated:
In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet…these people have Down Syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual “impairment” gives them an insight and an emotional intelligence and maturity that I can only aspire to. They do not need a needle in their brain to make them more functional, to help them find their car keys. What they need is a society that values what they have to offer. I would like to think that I can be a part of creating that society
Full post after the jump.
27 November, 2009
Previous posts questioning the efforts to "cure" Down syndrome begin here and here. Peter Elliott, Research Director for the Down Syndrome Research Foundation UK, writes:
In today's world, the parents of children with Down syndrome can raise their hopes and change the future for their child. Surgeons can repair a malformed heart and this is very common in Down syndrome.  Internal organs can be repaired, including Hersprungs where the baby can die within days of being born.   Then there is the very high risk of Leukemia, Celiac disease, and there is an impaired immune system which makes survival difficult for a host of illnesses.  All of these can be treated with modern medicine and the children survive.  Most will call these cures. The last challenge is the mental handicap caused by a disturbance to the brain chemistry.   We now know there is this chemical imbalance which not only effects and impairs short term memory it also prevents the fast processing of information and the formation and accessing of long term memory.
Full post after the jump.
27 November, 2009
Previous posts questioning the efforts to "cure" Down syndrome begin here and here. Silas Barss Donham, husband of Jenn Power, father of Josh and Jacob, and son of Contrarian, writes:
A person's view of this type of medical research depends on whether one sees Down syndrome as a disease or as a natural genetic variation, like left-handedness or hair colour.  Most people in our society fall into the first group, but then, most people in our society don't know much about people with intellectual disabilities.  I suspect most people in our society wouldn't imagine the second group exists. This is related to one's ability to appreciate the unique gifts people with Down syndrome offer to those around them.  We do not see them, nor do they see themselves, as people who suffer from a debilitating disease, or as incomplete attempts at humanness.  We see them as complete human beings who have a unique experience and viewpoint. Trying to "cure" this condition seems as foreign as trying to cure maleness, left-handedness, or homosexuality.
Full post after the jump.
27 November, 2009
David Croft-sShortly after I posted Jenn Power's comments, a friend asked, "What if it were autism instead of Down syndrome — would you hesitate then? As if in reply, Contrarian received this email from David Croft, a Dartmouth father of two autistic children:
Sure, there are aspects of autism that I would like to better control in the boys.  There are manifestations that, if they were removed, would make the boys more functional and easier to handle - but would the removal of these aspects likewise involve the removal of aspects of the boys that make them them?
David's full comments after the break.
27 November, 2009

[caption id="attachment_3540" align="alignleft" width="250" caption="Cathy Brady"][/caption] Many readers have responded thoughtfully, and at length, to our post about  Jenn Power's reaction to news that Stanford University researchers had made headway toward a potential treatment for the cognitive impairment that is one feature of Down syndrome. I've received a wide range of views from parents and researchers, about both Down syndrome and autism. Thanks to all who contributed. Contrarian is on the road with limited Internet access. I'll be posting these as I can over the next few days, more or less in the order I received them. Several are quite long, and deserve to...

27 November, 2009

Jenn Power, Community Leader of L'Arche Cape Breton, mother of twin boys with Down syndrome, and—disclosure—Contrarian's daughter-in-law, had an interesting reaction to news that a Stanford University research team has made headway toward a potential treatment for the intellectual impairment that is one of Down's symptoms: She welled up with tears. The researchers probed the brains of mice genetically engineered to develop a rodent version of Down syndrome. They found that a region known as the hippocampus lacked a neurotransmitter that enables the brain to perform contextual learning. This is the process of gaining and applying knowledge in real-world situations—things like...

24 November, 2009