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Could it be a 'cure'? Breakthrough prompts Down syndrome soul-searching
NBC News.com ^ | Aug. 11, 2013 | JoNel Aleccia

Posted on 08/12/2013 7:26:35 AM PDT by Mrs. Don-o


Jawanda Mast helps her daughter Rachel, 14, write thank you notes Rachel has Downs Syndrome.

In the 14 years since her daughter, Rachel, was born with Down syndrome, Jawanda Mast has always been clear that she’d change the condition if she could.

“I couldn’t love her more, but I would give almost anything to take away that extra chromosome,” the Olathe, Kansas, mom wrote on her blog. “While I may know she’s perfect, the world doesn’t.”

But when Massachusetts scientists announced recently that they’ve found a way to silence the chromosome that causes trisomy 21, also known as Down syndrome, it rocked Mast – and the rest of the disability community.

“It’s so hard to imagine you could actually do that,” Mast told NBC News. “Yes, I would take away the challenges, I would take away the health risks. But now I also stop and say, ‘Oh my goodness, how would that impact the rest of her?’”

Hailed as a “cure in a Petri dish,” the research by scientists at the University of Massachusetts Medical School is the first to find that it may be possible to switch off the genetic material responsible for the condition that causes cognitive delays, heart defects and shortened lifespans.

The development is expected to help create new treatments for problems caused by Down syndrome -- but it also raises the prospect of eliminating the condition entirely.

Since it became public last month, the breakthrough has sparked a firestorm of reaction among parents, advocates, ethicists and people with the condition, said Dr. Brian Skotko, a medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital.

“This research really launches a million questions,” Skotko said.


Rachel Mast, 14, in training with other students at her middle school
to become student ambassadors to incoming sixth graders.

On one hand, almost everyone agrees there’s a need for treatments to help the 250,000 people in the U.S. living with Down syndrome, including the nearly 7,000 babies born with it each year.

On the other hand, it’s unclear what costs there may be to shutting down the mechanism that creates people who offer lessons in patience, kindness -- and what it means to be human.

"If Down syndrome were completely cured, the world would lose something from the absence of that culture," said Skotko, who has a sister with the condition. "There is something positive that people with Down syndrome contribute to the world."

Brian Long of Boulder, Colo., is the father a 19-year-old son with Down syndrome. He welcomes the research, which could lead to treatments to boost Connor’s intellectual abilities and speaking skills and prevent disease. But he also wonders how tinkering with chromosomes could alter the essence of his son.

“So much of Down syndrome does impact the personality and character of the person,” said Long, 54. “In Connor’s example, we’ve known him for 19 years. We don’t want a wholesale change.”

Advocates like Julie Cevallos, vice president of marketing for the National Down Syndrome Society, emphasize that the research is still early.

“When you go as far as a ‘cure,’ that’s when folks step back and go: ‘We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives,’” said Cevallos, mother of a 5-year-old with the condition.

David Egan, a 35-year-old Vienna, Va., man with Down syndrome, said he applauds the progress in part because it might help with some of the social stigma that comes with the disorder. He has friends who've been made fun of because of their disability, who have a hard time coping with the condition.

“I’m not saying to shut it down completely,” said Egan, who has worked for 17 years in the distribution department at Booz Allen Hamilton, the technology consulting firm. “I would say just to understand more about it.”

But ethicists fear that genetic manipulation could spell the end of the disorder – and of people who have it.

“We now see very few persons with the symptoms of polio or the scars of smallpox,” said Art Caplan, head of medical ethics at New York University Langone Medical Center. “The same fate, despite the protests of some, awaits Down syndrome and other genetic diseases if engineering genes creates cures.”

That strong reaction surprised Jeanne Lawrence, the professor of cell and developmental biology who led the research. People may misunderstand the scope and promise of her work, she said.

It likely wouldn't be possible to "cure" Down syndrome, because the condition occurs at conception, she said.

“Even looking forward really far, I don’t see how we could fundamentally change a person who has trisomy 21 to silence all the chromosomes in their body,” said Lawrence.

Instead, it might be possible to target specific conditions: Perhaps there will be a way to treat congenital heart disease early in children with Down syndrome or to stave off Alzheimer's disease in adults, she added.

No question, the research is an advance in the understanding of Down syndrome, which occurs when people are born with three copies of chromosome 21, instead of the normal two copies.

(Humans are typically born with 23 pairs of chromosomes, including one pair of sex chromosomes, for a total of 46 in each cell. People with Down syndrome have 47 chromosomes in each cell.)

The researchers discovered that a gene called XIST -- which normally turns off one of the two copies of the X chromosome in female mammals, including humans -- could be inserted into the extra copy of chromosome 21 in lab cultures.

Using skin cells from a person with Down syndrome, they created pluripotent stem cells, which can form a range of different body cell types. When they inserted the XIST gene, they found that it effectively silenced the extra chromosome.

When they compared brain cells with and without the XIST gene, they found that those in which the extra chromosome had been suppressed grew more quickly and were better able to form progenitors of other brain cells, Lawrence said.

“That’s kind of useful right away,” she told NBC News. “There hasn’t been a good way to understand what’s wrong with these cells.”

But her work was never targeted to eliminate the condition, Lawrence added.

“I guess that we always thought that we were developing therapies to help children with Down syndrome. We never thought for a moment we would aid in the eradication of it,” Lawrence said.


Rachel Mast, 14, plays with her dog, Dora.
The lively middle-schooler has dreams of teaching kindergarten
and living in a pink house, her mother says.

That’s a relief to geneticists like Skotko. He worries about the demographics of the disorder, which has been altered from an estimate of 400,000 people with Down syndrome in the U.S. to 250,000, according to new research by Dr. Edward R.B. McCabe, chief medical officer at the March of Dimes.

The number of babies born with Down syndrome has been rising in the past decade, McCabe found. But research suggests that about 74 percent of women who receive a prenatal diagnosis of Down syndrome end their pregnancies. And -- in a country where women are delaying childbirth -- there are not nearly as many Down syndrome births as there could have been.

“What if fewer babies with Down syndrome are being born and Down syndrome starts to inch closer to being a rare condition?” said Skotko.

The promise of new drug therapies and treatments may help, he says, giving hope to families expecting Down syndrome babies and to those with older children – and adults.

Still, Jawanda Mast says she’s certain the questions raised by the new research will be debated for years in public meetings and in private conversations.

“It’s an interesting thing because Rachel’s whole life, there’s been this discussion: ‘If you could take it away, would you?’” she said. “I think, ethically, we’re just taking the cap off the bottle.”

JoNel Aleccia is a senior health reporter with NBC News. Reach her on Twitter at @JoNel_Aleccia or send her an email.


TOPICS: Culture/Society; News/Current Events; US: Kansas
KEYWORDS: abortion; chromosome; prolife; stemcell
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At present, 3 out of 4 mothers abort these babies as soon as they're diagnosed. Though the gene therapy is new and totally experimental at this stage, in the future more of these mothers will surely realize that their childrens' condition can be improved with therapy, just like children with any other prenatal condition.

If it was appropriate to kill the imperfect, we'd all be dead, wouldn't we?

Love thy neighbor as thyself. Your nearest neighbor is your unborn child.

1 posted on 08/12/2013 7:26:35 AM PDT by Mrs. Don-o
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To: Mrs. Don-o

Wonderful article. Sending it to my son and daughter in law who are the proud parents of TWO Down Syndrome children, (One their own, one adopted.)

Bless them.


2 posted on 08/12/2013 7:32:02 AM PDT by Salvation ("With God all things are possible." Matthew 19:26)
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To: Mrs. Don-o

I knew a gal with a Downs Syndrome child. I looked and saw the beauty that God endowed the child with and remarked what a beautiful child it was. She looked at me like I had grown horns and was nuts. So sad that she couldn’t see through the pain and inconvenience to understand what she really had. I never had to walk in her shoes, so I am probably not fully qualified to criticize, but it made my heart ache for her and her child. I worked the Biloxi Summer Olympics for a number of years and it was spiritually uplifting to be among these children.


3 posted on 08/12/2013 7:34:31 AM PDT by trebb (Where in the the hell has my country gone?)
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To: Mrs. Don-o
“When you go as far as a ‘cure,’ that’s when folks step back and go: ‘We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives,’” said Cevallos, mother of a 5-year-old with the condition.

??

4 posted on 08/12/2013 7:34:32 AM PDT by TaxPayer2000
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To: Mrs. Don-o

Its interesting that people without Downs Syndrome are concerned about “preserving the culture”

If you had Downs Syndrome, would YOU want to remain retarded your entire life to preserve your sweetness and simplicity?

I am reminded of the movie “Charlie” where the character is “cured” of his mental retardation by a miracle drug and becomes a sparkling genius, falls in love with the researcher etc— then realizes the drug is losing effect and realizes he will regress and will again become retarded. It was kind of horrifying, actually.

Some people in deaf culture have the same attitude- better to stay deaf than undertake surgery or other measures to restore hearing or communicate by voice - deafness is a “culture” thing, not a handicap

However - retardation? Far different imho


5 posted on 08/12/2013 7:39:02 AM PDT by silverleaf (Age Takes a Toll: Please Have Exact Change)
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To: Mrs. Don-o

It’s interesting that the researcher is emphasizing the limited utility of what she’s discovered so far, while less-knowledgeable people are going ballistic.


6 posted on 08/12/2013 7:42:03 AM PDT by Tax-chick (Ask me about the Weiner Wager. Support Free Republic!)
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To: silverleaf
This is so complex. In the era before scientific advances, how many of these children would've survived for long? If science can keep them alive, shouldn't the goal be to cure the disorder that would've killed most of them?

I don't know the answer. I get it that these children and others who are outside the norm teach us to be more human and compassionate, and many seem very content with their lives. I also get nervous when we play God with genetics.

It's a really deep philosophical crossroads we're at, with the ability to manipulate life.

7 posted on 08/12/2013 7:51:25 AM PDT by grania
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To: silverleaf
"I am reminded of the movie “Charlie” where the character is “cured” of his mental retardation by a miracle drug and becomes a sparkling genius, falls in love with the researcher etc— then realizes the drug is losing effect and realizes he will regress and will again become retarded. It was kind of horrifying, actually.

Yeah, I remember "Charlie", but the book (actually short story) rather than the movie. I thought it went past "kind of" horrifying. Of course, people with Alzheimers (and some other forms of dementia) undergo this precise same transition, so it is not exactly unknown in our society.

And it STILL goes past "kind of horrifying".

8 posted on 08/12/2013 7:56:42 AM PDT by Wonder Warthog
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To: grania
It's a really deep philosophical crossroads we're at, with the ability to manipulate life.

Agree...

My biology teacher predicted we'd arrive here. That was 38 years ago. He was ahead of his time.. God rest his soul.

9 posted on 08/12/2013 7:57:22 AM PDT by SomeCallMeTim ( The best minds are not in governm<p>ent.</i><p> If any were, business would hire them f)
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To: silverleaf

“Its interesting that people without Downs Syndrome are concerned about “preserving the culture””

I found that more than curious too - like Down Syndrome is a species in need of preserving.

I’d like to hear Sarah Palin’s take on this discovery.


10 posted on 08/12/2013 8:01:00 AM PDT by A'elian' nation ("Political Correctness does not legislate tolerance; it only organizes hatred." Jacques Barzun)
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To: Wonder Warthog

“Flowers for Algernon” was the title of the book. Algernon was the rodent on which the drug was first tested, and against which Charlie was measured when he started getting the drug. Algernon died, and it was a consequence of the drug. Then Charlie realized he, too, would die.


11 posted on 08/12/2013 8:01:09 AM PDT by knittnmom (Save the earth! It's the only planet with chocolate!)
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To: A'elian' nation

and Rick Santorum’s


12 posted on 08/12/2013 8:03:55 AM PDT by silverleaf (Age Takes a Toll: Please Have Exact Change)
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To: Salvation
My late brother in law, Harvey, had Down...and lived to a near-record 69 years of age.

Like many, he had a bit of savant to him....he couldn't do any kind of arithmetic - yet he couldn't be beaten in card games.

13 posted on 08/12/2013 8:09:10 AM PDT by ErnBatavia (Carlos Danger for mayor....NYC deserves him)
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To: silverleaf
This is very good news and in terms of the increased quality of life that it could mean for those afflicted... if this therapy pans out it will be nothing short of a miracle.

My wife has significant experience working as a nurse taking care of people with Downs Syndrome, and has been on the board of a non-profit which takes care of those afflicted. There is basically an entire government supported industry that has grown up around the care for people with Downs Syndrome. It is not that surprising that some who may have to find a new way to make a living... might view this development in a negative light.

Our assumption here is that in general the relatives who are concerned about “preserving the culture” are either getting a whole lot of assistance including substantial government funds given to them to take of their relative or they are not the ones actually carrying for their relative.

We have known entire families who have basically been supported by the money that they get from the government to take care of their relative with Downs Syndrome. Some of these people might also be inclined to make up these same type of lame excuses to deny their relative proper treatment when and if it becomes available.

We personally think that it would be inhumane to even consider withholding this type of treatment should it become effective and available.

14 posted on 08/12/2013 8:09:37 AM PDT by fireman15 (Check your facts before making ignorant statements.)
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To: Mrs. Don-o

There are some in the deaf community that are opposed to cochlear implants that can in many cases restore near normal hearing. Their concern is also that the widespread use of this procedure would be the end of the sign language based “deaf culture”


15 posted on 08/12/2013 8:20:04 AM PDT by The Great RJ
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To: silverleaf
Some people in deaf culture have the same attitude- better to stay deaf than undertake surgery or other measures to restore hearing or communicate by voice - deafness is a “culture” thing, not a handicap

I rank that similarly to nearsighted parents not wanting to buy their kids glasses so they can share in "blurry" culture.

16 posted on 08/12/2013 8:26:05 AM PDT by KarlInOhio (This message has been recorded but not approved by Obama's StasiNet. Read it at your peril.)
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To: Tax-chick

Yes, I noticed that too. I guess it wouldn’t sell as good if a reasoned discussion of the turth was reported.

I also think that in the back of most ‘journalists’ minds is Sarah Palin, and the posssiblity that she may, again, be proven right. So they need to fan the flames to falming hot in order to stop this research before it becomes available for use.


17 posted on 08/12/2013 8:26:10 AM PDT by Balding_Eagle (When America falls, darkness will cover the face of the earth for a thousand years.)
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To: Mrs. Don-o
I'm totally stunned by these people. Friendly Analogy: "Cure Alzheimer's? No way! We love my mother-in-law just the way she is. Her wacky personality makes us love her all the more. We've gained so much by being her caretakers, about how to care for the elderly."
18 posted on 08/12/2013 8:26:42 AM PDT by Nabber
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To: A'elian' nation; silverleaf; TaxPayer2000
You're probably heard the true story about the two deaf lesbians who decided to advertise for a sperm vendor with a genetic deafness condition, in hopes one of them could conceive a baby who would be hearing-disabled like them, and therefore a part of their "deaf culture."

This ideology, as I understand it, is very much nurtured in Gaulladet College, which has promoted the idea of deaf people being analogous to an ethnic minority, preserving and developing their own distinctive world.

The idea of "preserving the Down Syndome culture" is similar. And similarly wrong-headed. It comes from the "dictatorship of relativism" which deems it bigotry for anything to be termed "normal" or "abnormal," "natural" or "unnatural."

I was recently reprimanded when I called homosexuality abnormal. I was told I could say "sexual minority," but even "atypical" was thought to be too stigmatizing.

How can you do medicine --- which is supposed to cure, heal, repair, strengthen --- when you can't define what "healthy" is?

19 posted on 08/12/2013 8:32:24 AM PDT by Mrs. Don-o ("No one on earth has any other way left but -- upward.” - Alexander Solzhenitsyn)
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To: Balding_Eagle

Certainly no well-intentioned and thoughtful person can having anything to gain from misstating what’s currently been achieved in this research, or from generating hysteria either for or against additional study.

I know people have a lot of emotional investment in the subject, but *calm down*. When a therapy that is potentially useful to humans is proposed, it will need to be tested; results can be observed, etc., etc.

Someday we may have a way to instantly restore a person to full health, no matter what has gone wrong - like in “Star Trek” - but we’re nowhere near that now. No “antidotes,” no magic spells ... just, maybe, incremental advances in prevention or alleviation for conditions, whether they’re genetic or acquired.


20 posted on 08/12/2013 8:33:09 AM PDT by Tax-chick (Ask me about the Weiner Wager. Support Free Republic!)
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To: silverleaf

It is the same thing, and it is pathetic and disgusting - the term “disability community” says it all.


21 posted on 08/12/2013 8:34:44 AM PDT by kabumpo (Kabumpo)
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To: silverleaf

“Its interesting that people without Downs Syndrome are concerned about “preserving the culture””


I was positive when I started to read this that some moron/morons would lament the loss of “the culture” just as some evil scum lamented the loss of the “Deaf Culture” for the few who could have their hearing restored by modern technology.

There is no compassion in celebrating something which limits all the possible life experiences HOWEVER, you will find all these false compassionate people in the support community for the “culture” are scared to death of losing their jobs and power. Despicable people, everyone of them.


22 posted on 08/12/2013 8:35:27 AM PDT by Wurlitzer (Nothing says "ignorance" like Islam! 969)
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To: Mrs. Don-o

Don’t cure these people because we will lose our jobs.

Cops live off of crime
Doctors live off of sickness
Clergy live off of sin
Insurance lives off of disaster
Farmers live on hunger
Politicians live off all of the above

How many billions of souls in this world are not able to improve their lot in life because someone else has a vested and profitable interest in their continued misery?


23 posted on 08/12/2013 8:37:58 AM PDT by FreedomNotSafety
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To: knittnmom
"“Flowers for Algernon” was the title of the book. Algernon was the rodent on which the drug was first tested, and against which Charlie was measured when he started getting the drug. Algernon died, and it was a consequence of the drug. Then Charlie realized he, too, would die."

Yup. That's pretty much how I remember it. But I don't recall it as a book......as I remember it was in a collection (19XX's Best Science Fiction Stories or some such similar venue) But I seriously doubt that it was dying that got to Charlie. Even in his brilliant mode, he had to know that he (and we all) are going to die. It was the transition back to stupidity that was the horror.

24 posted on 08/12/2013 8:39:08 AM PDT by Wonder Warthog
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To: KarlInOhio; Nabber; fireman15; The Great RJ
May interest you.

#19

25 posted on 08/12/2013 8:39:13 AM PDT by Mrs. Don-o ("No one on earth has any other way left but -- upward.” - Alexander Solzhenitsyn)
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To: silverleaf
The world has changed a lot with their views toward disabilities.

My aunt, born in the 1940s, lost her hearing when she was young. She learned to lip read and become a fully functional member of society despite the hearing loss. Ditto for her husband. They both worked hard and put three daughters through Ivy League colleges (big mistake, but that's another story).

Sadly, for the most part, they don't even teach lip reading any more. Signing is quicker to teach and quicker to learn. Trouble is, it severely limits the number of people with whom they can interact and available opportunities as a result.

Sadder still is the growing number who are perfectly OK with it because said disability means another government check.

26 posted on 08/12/2013 8:43:13 AM PDT by Vigilanteman (Obama: Fake black man. Fake Messiah. Fake American. How many fakes can you fit in one Zer0?)
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To: Mrs. Don-o

Down’s is somewhat of a special case, as those with Downs tend to be exceptionally loving and cheerful. Ergo, treatment and cure is a tougher call..... Nevertheless, the decision is still a no brainer: if the treatment and cure works, use it.


27 posted on 08/12/2013 8:43:58 AM PDT by mbarker12474
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To: Mrs. Don-o

I hope it’s just the article making people look like idiots. In no way would this therapy somehow restore their existing children to non-Downs Syndrome status.

But of course research to “cure” it in future generations should be pursued and celebrated if it is achieved.

Would these people have been against Salk because his miracle vaccine would affect the “disabled culture” enjoying their existence in Iron Lungs and on crutches due to polio?

These people are cray-cray.


28 posted on 08/12/2013 8:48:10 AM PDT by GatorGirl (Who is John Galt?)
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To: fireman15
We personally think that it would be inhumane to even consider withholding this type of treatment should it become effective and available.

Profoundly so. I have a 20 year old step son with autism. We would do anything, anything for a cure. These irresponsible, self centered, selfish people fill me with sorrow and anger.

I guess is makes them feel "special" to care for a disabled kid to the point of Munchhausen by proxy. Either that or they stand to loose benefits if the kid recovers and can enjoy a normal life.

29 posted on 08/12/2013 8:49:07 AM PDT by usurper (Liberals GET OFF MY LAWN)
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To: Mrs. Don-o
I was recently reprimanded when I called homosexuality abnormal. I was told I could say "sexual minority," but even "atypical" was thought to be too stigmatizing.

"Super freak" was entirely out of the question.

30 posted on 08/12/2013 8:50:47 AM PDT by Jeff Chandler (People are idiots.)
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To: FreedomNotSafety
Clergy live off of si

I don't know. I think a lot of them live off of both people's need for community and their need to get a shot of "feel good" once a week.

31 posted on 08/12/2013 8:54:23 AM PDT by Jeff Chandler (People are idiots.)
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To: GatorGirl

. . . opposed to using a cure because it would destroy the cancer community.


32 posted on 08/12/2013 8:55:49 AM PDT by Jeff Chandler (People are idiots.)
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To: Mrs. Don-o
I was recently reprimanded when I called homosexuality abnormal.

I'm having a hard time picturing you in a context where that could happen (you generally post about being engaged in activities in the Church, among pro-life or other conservative people, etc).

33 posted on 08/12/2013 8:58:21 AM PDT by steve86 (despairing but what can I do)
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To: Mrs. Don-o

I’m constantly amazed by the frightening and downright evil reactions that rise to the surface when a new miracle cure is discovered. It’s like some people actually WANT heritable and communicable diseases to ravage human beings and leave behind torn and ravaged persons as some sort of macabre signpost pointing towards human frailty and misery.

There was a similar outpouring of grief when the rubella vaccine “threatened” to “destroy” deaf culture by actually preventing one of the major sources of acquired deafness.

I for one welcome revolutionary new treatments that prevent or treat crippling disorders.


34 posted on 08/12/2013 9:02:43 AM PDT by jameslalor
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To: Mrs. Don-o

And 3-4% of those are false positives. Not that it matters, the abortion death rate is still 100%.


35 posted on 08/12/2013 9:05:24 AM PDT by antidisestablishment (Mahound delenda est)
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To: TaxPayer2000

Some people get fooled by their own propaganda. They’ve spent so much time telling the rest of the world that there is nothing wrong with people who have some condition or the other, that if a cure is found, they don’t want it. For example, some deaf people don’t like other deaf people who regain their hearing with implants. They think those who get “cured” are betraying the “deaf culture”.


36 posted on 08/12/2013 9:26:52 AM PDT by Boogieman
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To: Mrs. Don-o

Years ago I was astonished that cures for deafness were being opposed. I guess people object to the word “cure” as it implies that there is something wrong with people and that is a no-no. These days you are supposed to be proud of your afflictions/illnesses, perversions, and defects. I am bald, find no pride in it and if a real cure was available would get it. IMO, If people have a condition and want to keep or have it cured that’s their choice.


37 posted on 08/12/2013 9:35:13 AM PDT by Brooklyn Attitude (Obama being re-elected is the political equivalent of OJ being found not guilty.)
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To: Wonder Warthog
“Yeah, I remember “Charlie”, but the book (actually short story) rather than the movie.”

The book was titled: Flowers for Algernon and it might be best described as a novella. Flowers was targeted at the young adult market, although I do not think that a genre by that name existed at the time. As a pre-adolescent reader in 1968 or so I found it quite poignant. Anyway, as I recall Flowers touched on the seminal moral dilemma fleshed out in the posted article. For the central character Charlie, the medical cure for his mental handicap brought on as many difficulties as it did benefits. When the effects of the treatment ultimately wore off and he returned to his original condition there was a sense of great loss, almost tragedy, but the reader was left with the sense that Charlie was happier with the mind of an innocent child, gaining comfort from his relationship with a pet mouse (I recall it as a mouse anyway, named Algernon) than in his exulted state as a troubled genius.

As a libertarian, I believe that every individual has the right to pursue the full flowering of his God given talents. It is a moral wrong to deny another sovereign being the opportunity to express themselves to the fullest, and the fact that others may learn important lessons of charity from them were they to remain in their artificially limited and helpless condition is of no moral significance whatsoever.

Having said this, however, as Flowers demonstrates, gaining knowledge is not an unalloyed good. Just ask Adam and Eve. It may well be true that some individuals suffering from Down's will be less happy when cured than they were suffering the chromosonal abnormality. Caregivers may not like some of the changes that occur to their personalities. But no one has the right to make this decision for them if they are capable of doing so themselves. And, if it is concluded that the individual does not have the capacity to make an informed decision about the procedure, society should presume that he would want it if he were able to make it unless it may be demonstrated that the procedure would cause bodily harm.

38 posted on 08/12/2013 9:51:49 AM PDT by irish_links
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To: Vigilanteman
"Sadly, for the most part, they don't even teach lip reading any more."

I'm 66, and losing my hearing (pretty much totally deaf in one ear, and losing my ability to comprehend speech in the other....despite amplification w. hearing aids). Since people who get cochlear implants DO NOT actually "hear", but learn (via therapy) to "brain interpret" the implant signal as speech, I wondered if such an approach would help. Turns out that it will, and there is software that will allow one to "train oneself" to interpret the "new" speech patterns that arise from loss of certain frequency ranges.

Your comment led me to check, and there is indeed software available to teach lip reading, as well.

39 posted on 08/12/2013 10:01:23 AM PDT by Wonder Warthog
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To: Mrs. Don-o

I remember when the deaf actress Marlee Matlin, who always used sign language and an interpreter, spoke a few words when accepting an award. The deaf community was FURIOUS with her! There was also a deaf Miss America who spoke very well, and she was hated and rejected by much of the deaf community. I guess you can only use sign language in order to be accepted by them. I’ve heard it said that you have to be born deaf, to deaf parents, and attend a deaf school where only sign language is taught, in order to be REALLY accepted.


40 posted on 08/12/2013 10:31:31 AM PDT by Nea Wood (When life gets too hard to stand, kneel.)
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To: Mrs. Don-o
“When you go as far as a ‘cure,’ that’s when folks step back and go: ‘We’re not looking for a cure.

This is an increasing trend. There are children born to deaf parents -- the parents making certain that their children WILL be deaf, through genetic testing. And then refusing operations that would make their children hearing, claiming that "deaf" is not a handicap, but a culture, and the child should be allowed in the culture.

Except, of course, when it comes to ADA, then they are all over the "disability" for which they expect the world to adapt to their culture, and other people to spend their own money to make it easier for their "non-disabled" disabled kids to exist.

I expect fat people to make the same claim eventually, along with the blind, and others with what will be curable ailments.

And of course, we have gotten to where in some places it is ILLEGAL to try to cure people of some abnormalities, like a tendency to same-sex attraction, or the desire to wear women's clothing.

Interestingly, the show "House" dealt with this ethical question more than once, when House would determine how to cure something that people didn't even know was a problem, and then they'd debate whether changing someone's basic personality was a good thing. In one case, curing a brain defect made someone mean I believe, who used to always be happy.

41 posted on 08/12/2013 11:01:49 AM PDT by CharlesWayneCT
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To: Mrs. Don-o

If this can be cured in the womb instead of aborting the innocent child then GREAT!

I just hope it doesn’t end up with morons like the deaf people out there that won’t pursue cochlear implants for their deaf children because they see it as “selling out” as they revel in their disability.


42 posted on 08/12/2013 11:04:53 AM PDT by GraceG
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To: Nea Wood

I remember when the deaf actress Marlee Matlin, who always used sign language and an interpreter, spoke a few words when accepting an award. The deaf community was FURIOUS with her! There was also a deaf Miss America who spoke very well, and she was hated and rejected by much of the deaf community. I guess you can only use sign language in order to be accepted by them. I’ve heard it said that you have to be born deaf, to deaf parents, and attend a deaf school where only sign language is taught, in order to be REALLY accepted.

Modern Day Bullshit Self Destuctive Tribalism......

I could rant for hours on this subject.


43 posted on 08/12/2013 11:06:36 AM PDT by GraceG
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To: CharlesWayneCT

Because we live in a time where every mental illness must be affirmed, those who live in a fantasy land must be told that the fantasy land is reality. Anything else is “hate”.


44 posted on 08/12/2013 11:08:08 AM PDT by GeronL
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To: Mrs. Don-o

You are so right about Gaulledet College.

There was a huge student protest at Gaulladet in 1988 when the students decided that a man who could hear was about to become their college president. Never mind that the 7 previous presidents were not deaf.

The students got their way. The newly current president of the college is also deaf.

A man or woman that can hear need no longer apply for the position. A new right has been won. A new culture created.

This is tne New Enlightenment of narrowing all possibilities. Expertise and sophistry is knowing more and more about less and less.


45 posted on 08/12/2013 11:16:45 AM PDT by A'elian' nation ("Political Correctness does not legislate tolerance; it only organizes hatred." Jacques Barzun)
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To: steve86

It was a “lady” (and I use that in a euphemistic sense) in my church -— yes, my very own parish! -—who has “issues” (another one from the handy euphemism thesaurus) with the church on many questions regarding sex & gender.


46 posted on 08/12/2013 11:42:51 AM PDT by Mrs. Don-o ("No one on earth has any other way left but -- upward.” - Alexander Solzhenitsyn)
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To: steve86

It was a “lady” (and I use that in a euphemistic sense) in my church -— yes, my very own parish! -—who has “issues” (another one from the handy euphemism thesaurus) with the church on many questions regarding sex & gender.


47 posted on 08/12/2013 11:43:05 AM PDT by Mrs. Don-o ("No one on earth has any other way left but -- upward.” - Alexander Solzhenitsyn)
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To: Wonder Warthog
This interests me--- I'd like to look into it. I have moderately severe hearing loss and have already blown my hearing-age budget on a device which no longer helps me decode sound, because my hearing continued to deteriorate after I got it, and essentially the device is maxed out: it can't be ratcheted up any more.

If I could decode better what I already hear, with frequencies missing, it would help a LOT.

48 posted on 08/12/2013 11:48:46 AM PDT by Mrs. Don-o ("No one on earth has any other way left but -- upward.” - Alexander Solzhenitsyn)
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To: Wonder Warthog
See post #40 to get more of an idea of what I'm talking about. it isn't a lack of means or methods, as much as it is a lack of desire by the "community leaders" for the deaf to join the mainstream.

For pretty much the same reasons that black "community leaders" don't want black people to go mainstream.

It would give up their power to be advocates for the people they are holding down through their advocacy. Even worse, it could mean a loss of government checks.

Another family friend makes his living as a sign language interpreter. Sign language was one of the skills he acquired when he went into social work to help hearing impaired people get into the mainstream. Sadly, it is the only skill he uses anymore because, again, the "community leaders" don't want them in the mainstream. Thankfully, a lot of them buck the leaders and get there anyway. But a lot more don't.

My friend's most common interpreting jobs are for the courts.

49 posted on 08/12/2013 12:26:01 PM PDT by Vigilanteman (Obama: Fake black man. Fake Messiah. Fake American. How many fakes can you fit in one Zer0?)
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To: Vigilanteman
"See post #40 to get more of an idea of what I'm talking about. it isn't a lack of means or methods, as much as it is a lack of desire by the "community leaders" for the deaf to join the mainstream. For pretty much the same reasons that black "community leaders" don't want black people to go mainstream."

Oh, I'm sure you're right. But part of it may be that many in the deaf community simply don't know (aren't taught) that other tools are available. The existence of software that they can use to teach themselves lets them bypass their "leader/opinionmaker" group. "I" (and I think many of "them") can certainly understand the superior effectiveness of lip reading over signing for "accessing" a larger fraction of the population.

50 posted on 08/12/2013 12:51:12 PM PDT by Wonder Warthog
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