Well, so far so good! No stomach upset, no weird side effects. We started him on 1,000 mgs, 2 capsules a day, and I will say, he did seem a bit more talkative yesterday. He was more descriptive in his story telling, more enthusiastic with trying to get the details in. I'll keep you all posted!
Ok, between Facebook, Twitter @MyHealthiestLif, and My Healthiest Life, it's all I can do to keep up with Jaden's Journal anymore. Follow me on Facebook, if you can, that's where I'm updating the most! Hope everyone's doing well! I love hearing from you:)
Is Curcumin A Breakthrough Treatment For Down Syndrome?
Posted by L. Noelle Labels: curcumin, down syndrome, myhealthiestlife.com, noelle quero, qadoshyah fish
I have great news. We are going to be starting Jaden on Curcumin as soon as it arrives in the mail, hopefully this Friday. We will be doing updates on everything we notice as far as improvements in speech and/or cognition. I wanted to post a first hand account from an extraordinary young lady who's younger brother, Oisiyyah has Down Syndrome. She has taken on the role of activist, author, researcher and teacher for not only her brother but many other parent's and is truly an inspiration in all that she does. She has also written a book called, Down Syndrome: What you CAN Do, available at LuLu.com She, along with many other parent's has been witnessing first hand the amazing changes taking place in her younger brother. Please read below to hear what she has to say.
Written By: Qadoshyah Fish
Longvida Curcumin – Our experience with Osiyyah
New research regarding Down syndrome is always going around the web. Sometimes the research is very in-depth and I may not have the time at that exact moment to research that particular subject, so it’ll go in my “Research to look at” folder. But, when I was approached with information about Longvida Curcumin back in April of this year (’09), I jumped into the research mode. The small bit of information I was presented with initially and asked to look at further looked so promising, I had to know more about Longvida Curcumin.
It only took about two days of research before I was completely convinced that Longvida Curcumin was something that showed a lot of promise for individuals with Down syndrome.
Over the years, I had researched Curcumin, the active ingredient in Turmeric and found it to have many benefits. But, there was a problem as to how it could be adequately absorbed into the body, especially the brain, where it is needed most.
For several years we gave my brother, Osiyyah, Turmeric in hopes that it would be beneficial to him. We never noticed any changes, so who knows if it was actually helping him or not.
Curcumin has many benefits: Preventing amyloid plaque build-up, breaking up amyloid plaques & tangles, reducing inflammation & oxidative stress, causing neurogenesis & synaptogenesis, increasing glutathione levels, anti-cancer and so much more.
We started giving Osiyyah Longvida Curcumin the first part of May. As usual, we started with a small dose and slowly increased the dosage over the course of a week. For the first week we were at 500mgs/day, then went to 1000mgs/day for 8 weeks. At the 8 week mark we increased to 1500mgs/day and after a week of that we went to 2000mgs/day. That is the dosage we have been on since July.
About 2 weeks into Osiyyah taking Longvida, we started noticing changes. To put this in perspective, we were *not* expecting to see any results or changes for several weeks (I had 8 weeks in my mind), since for some things, it may take awhile to see any results. But, the changes we started seeing were not just coincidence. They were HUGE changes. Changes I would’ve never expected. Changes that weren’t happening before Longvida.
What were those changes? Those changes all involved Osiyyah’s speech. Osiyyah is 4 ½ years old and his speech is *very* delayed for his age. Osiyyah started saying new words very frequently . . . every day he would have a new word or 5 new words! He copied everything we’d say and repeat the words we said.
Within a couple more weeks, Osiyyah started using two word sentences very regularly. And he also continued to say new words and KEEP saying those new words. It wasn’t just a one-time coincidence.
As the weeks went on, we continued to notice MASSIVE changes. Osiyyah’s speech was picking up so much and so quickly, it was amazing.
He started using several word sentences on a consistent basis and has not stopped. These changes weren’t a one-time thing, they are changes that have occurred and continue. One of my favorite sentences he says is “Whole Bunch” – the way he says it is just too cute!
As we are about 5 months into giving Longvida Curcumin now, we have continued to see progress. I’d call the changes we have seen over the past few weeks, “deeper progress.” Osiyyah asks questions all the time, like “Why?”, “Who?”, “What?” & his newest one as of today “Do?”. As in “Why are we doing this?”, “Who’s is this?”, “What do you want?” or “What are you doing?” or “What can I do?”.
It’s very neat and exciting to see Osiyyah being so much more interactive and understanding in everything :)!
For more details of the changes we’ve seen, they can be seen at our blog - http://gotdownsyndrome.blogspot.com/search/label/Longvida
Boom Boom Boom by The Black Eyed Peas! Jaden Break Dancing
Posted by L. Noelle Labels: black eyed peas, boom boom boom, break dancing, jaden break dancingFinally! Caught on tape, Jaden Break Dancing! It only took a year and a half to capture him break dancing live! Every time I have gone to turn on the camera to catch his moves, he has stopped! How frustrating, right? I'm sure you all know what that's like, trying to get your child in one of their cute performances!
One of Jaden's favorite past times is break dancing and when he hears a song with a good beat, watch out, he breaks out the Old School Moves! He does the worm and everything! Boom Boom Boom, by the Black Eyed Peas is Definitely his new favorite song. He asks for it to be played constantly! Hope you enjoy this!
CAUTION: Sorry, but the sound is pretty loud, turn down your volume! Get ready to laugh!
Is Curcumin A Possible Wonder Drug?
Posted by L. Noelle Labels: curcumin, health articles, natural remedies
Curcumin, which comes from Tumeric. just may be the natural remedy researchers have long been waiting for! Currently it is being studied to help treat everything from AIDS and Alzheimer's to Cancer. So far, most studies look very promising and there have been very few negative side effects reported. UCLA is currently doing a long term study using Curcumin to treat Alzheimer's patients and so far the results have Scientists very optimistic. Here is a little background on Curcumin and why it is so beneficial. But before you run to your local Health Food store and ask for Curcumin, you need to understand that most commercially available curcumin is not Bio-Available, meaning it doesn't really absorb well or stay in the blood stream. It's taken researchers quite a bit of time to get the right formula down, so that it can actually be a bio-available treatment which crosses the Blood-Brain-Barrier (BBB) Because my son has Down Syndrome, we closely follow new research on any natural product that reduces inflammation and plaque build up, especially since Down Syndrome and Alzheimer's Disease share many similar characteristics. In fact, it is now shown that most people with Down Syndrome will inevitably develop Alzheimer's Disease.
The benefits of taking curcumin daily, the active component of the spice turmeric, may be many or none, depending on the supplement. Many of the curcumin benefits have to do with the prevention of chronic and life threatening diseases that are often related to aging.
But, in order to provide this preventative benefit, it must be able to get to your bloodstream. Researchers have found that eating turmeric or taking a supplement by mouth does not significantly increase curcumin-levels in the blood. Digestive acids have a damaging effect that basically renders it useless for anything other than stomach complaints.
In order to get the long-term health benefits of taking curcumin daily, a supplement must include an enteric coating. The standard veggie-caps used by most supplement manufacturers don't work.
After scientists had done some of the research concerning the curcumin benefits as anti-cancer, anti-inflammatory and anti-oxidant agents, they looked at how well the compound is absorbed into the bloodstream. The measured blood serum levels after volunteers had taken very large amounts, up to 10 grams, and found that concentration was very low.
This is seen with other nutrients, as well. An enteric coating is necessary to allow the nutrients to make it through the stomach, undamaged. Once in the upper intestine, the nutrients can pass through the intestinal wall and enter the bloodstream.
The curcumin benefits that you will see listed on a standard supplement are based on laboratory studies using cell cultures and animal models. In order to provide the benefit, the nutrient must be able to interact directly with the cells. This will only happen if it is absorbed into the bloodstream. The same is true of resveratrol and other anti-cancer nutrients.
Assuming that the supplement is properly designed, the benefits of taking curcumin daily may include lower cholesterol, a healthier circulatory system and improved mental clarity. It may be beneficial for relieving stress, depression and anxiety, as it has been shown to increase concentrations of one of the brain's proteins. Called BDNF, low levels of this protein are associated with those conditions, as well as decreased mental clarity.
The Health Benefits of Curcumin
Inspirational Mom Wins Fight To Use Natural Treatments To Help Her Daughters
Posted by L. Noelle Labels: addi and cassi hempel, chris hempel, cyclodextrin, holistic treatments
I recently had the privilege of speaking with Chris Hempel, mother to Cassidy and Addison, via Email. I am totally inspired by the work she is doing in helping to find treatments for her daughter's who have been diagnosed with the rare and so far fatal genetic condition called Niemann-Pick Type C. The article below was recently published in The Wall Street Journal and beautifully reported by Amy Docker Marcus. This an inspirational story for many reasons, and because this is a neurological condition with similarities to Alzheimers Disease, there may be treatments that work in Down Syndrome that could potentially work in treating Niemann-Pick Type C. To read more about Addi and Cassi Hempel after you read this article, go to their website HERE.
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By AMY DOCKSER MARCUS
From the moment her twin daughters, Addison and Cassidy, were diagnosed with a fatal genetic disease in October 2007, Chris Hempel has been searching for a drug that might save their lives.
The 5-year-old girls were diagnosed with a devastating cholesterol metabolism disorder known as Niemann-Pick Type C, which is ultimately fatal. Soon after, Ms. Hempel learned that researchers found that a form of a compound called cyclodextrin extended the lives of affected mice.
Ms. Hempel set out to gather as much data as possible. She got a list of all major cyclodextrin distributors and connected with one in Florida, who shared scientific studies and other information with her. She found a short report in the medical literature about a doctor who had treated a child with a different disease using cyclodextrin and tracked him down. She became increasingly hopeful that, although cyclodextrin isn't approved as a drug in the U.S., she might get the Food and Drug Administration to allow her to give cyclodextrin infusions to her girls as an experimental treatment.
Her search for information also led her to James Hildreth, 52, a pre-eminent AIDS researcher who heads the Center for AIDS Health Disparities Research at Meharry Medical College in Nashville, Tenn. It turned out that he too was seeking FDA approval to run a trial using cyclodextrin, in a vaginal cream to help prevent HIV transmission during heterosexual sex. Ms. Hempel wanted him to combine forces with the NP-C investigators to push forward cyclodextrin research.
That was only the beginning of Ms. Hempel's long journey through the health-care research community -- a distributed and labyrinthine collection of researchers who, for all their expertise, often remain unaware of advances made elsewhere. The problem is even more acute among researchers working on different diseases. But for some serendipity, curiosity -- or, in this case, a willful Ms. Hempel -- some knowledge in one lab may never make its way to another that could be on the verge of a new therapy.
Drugs approved for one disease often turn out to be effective in others -- frequently when someone has a hunch. Thalidomide, originally used for morning sickness but taken off the market because it caused birth defects, is being used in cancer treatment.
Researchers at Pfizer were developing Viagra to treat high blood pressure when they noticed during early tests that it treated impotence. But that happened within the same company. It is even more difficult when researchers are at different labs.
When Ms. Hempel, who lives in Reno, Nev., became passionate about Dr. Hildreth's work, she was determined to bridge the disparate knowledge. "Right now we have limited data on cyclodextrin. But what if a lot of people started looking at it from different angles and across different diseases?" Ms. Hempel said. "It could lead to something that helps save Addi and Cassi's lives."
Ms. Hempel had been researching cyclodextrin for months when she attended the June 2008 meeting in Tucson, Ariz., of the Ara Parseghian Medical Research Foundation, set up by the family of the legendary football coach who lost three grandchildren to NP-C disease. The foundation was providing some funding for cyclodextrin studies in the rare disease, and the latest data were presented there. In an email sent after the meeting, Ms. Hempel wrote to the NP-C researchers that, based on the data she heard, she and her husband, Hugh, planned to seek FDA approval to give the girls cyclodextrin infusions. "I feel very strongly that we must try this to help save Addi and Cassi from this horrible disease," she wrote.
She had already put together a three-inch binder of research studies about cyclodextrin. Working with three other families whose children have NP-C disease, they hired a scientist who began writing a request to the FDA for the Hempel children to receive cyclodextrin infusions. But Ms. Hempel knew that she needed more human data if she was going to persuade the FDA that the drug was safe enough to use in her children.
While searching for safety data on cyclodextrin, she spoke with Charles E. Strattan, a cyclodextrin expert and CEO of CTD Holdings Inc., who was helping Ms. Hempel do research. He told her Dr. Hildreth was interested in the same compound for his work in HIV and suggested that the two of them talk.
During a long phone conversation in October 2008, Dr. Hildreth told Ms. Hempel that he believed the protein responsible for NP-C disease also plays an important role in HIV. And in previously published work, he showed that cyclodextrin appeared to inactivate the HIV virus and prevent it from replicating.
The talk galvanized Ms. Hempel. Dr. Hildreth offered to share what he knew about cyclodextrin's safety with the FDA in support of the Hempels' request. Ms. Hempel proposed that the two of them go to Johnson & Johnson, which had studied cyclodextrin, to see if the company would be interested in sponsoring a clinical trial. "I knew our stories would be even more powerful if we told them together," she said.
As is typical in the field, Dr. Hildreth was reluctant to share unpublished data, and he rarely went to scientific meetings that weren't related to HIV. He was moved by Ms. Hempel's efforts to help her children, but also surprised by her embrace of his work. "Some of the things we as scientists take for granted about how work will be done and the fact there are silos, with her there is none of that at all," he said.
When Ms. Hempel called a top National Institutes of Health AIDS researcher to tell him about Dr. Hildreth's findings and propose joint work in HIV and NP-C disease, Dr. Hildreth told her that a scientist never would have made such a call. In recent months, Ms. Hempel has introduced Dr. Hildreth to NP-C researchers who were also studying cyclodextrin. She also arranged for him to discuss his HIV findings with two Nobel Prize-winning scientists interested in Niemann-Pick proteins. "Our paths would not have crossed otherwise," he said.
He and Ms. Hempel recently had a conversation with senior officials at Johnson & Johnson. The FDA at first turned down the Hempels' request to do cyclodextrin infusions in the girls, concerned there wasn't enough human safety data. But after Ms. Hempel contacted them about her plight, the company wrote a letter to the FDA giving the agency permission to look at all of the safety data it had submitted related to cyclodextrin. The FDA subsequently gave permission for the Hempels to proceed. The girls will start cyclodextrin infusions this month.
That might have been the end of the story except for Ms. Hempel's insistence that more was at stake, says Steven A. Silber, a vice president at Johnson & Johnson. After listening to Ms. Hempel and Dr. Hildreth's presentation, Dr. Silber set up a meeting so Dr. Hildreth can present his data to the head of one of its companies that makes anti-viral medications. Dr. Hildreth says that Ms. Hempel's involvement got his research "the attention of individuals higher up in the organization than I might have been able to get on my own."
This May, the Parseghian Foundation will host its annual scientific meeting. The group plans to hold a special session dedicated to the work on cyclodextrin. Cindy Parseghian, president of the foundation, says she hopes researchers working with cyclodextrin in other diseases will also attend. "We think there should be more cross-fertilization," she said. Dr. Hildreth says he plans to share his findings at the meeting.
Dr. Hildreth recognizes that his unusual partnership with Ms. Hempel also has some risks for the HIV trial he is planning. "It is a remote possibility, but is a possibility, that if her beautiful girls are done some harm by the infusions, that would clearly do harm to our efforts," he said. Still, he adds, "I spent a lot of time thinking about what I would do if I were in her position. My answer is I would do exactly the same thing."
Late last month, the Hempel girls underwent surgery at a California hospital to get a small medical device implanted under their skin to make it easier to receive regular cyclodextrin infusions. Dr. Hildreth visited them in the hospital.
Write to Amy Dockser Marcus at amy.marcus@wsj.com
Well, he's been in school and busy with his life! It's been a while...I seem to say that every time I post something new. Must be guilt. Progress is definitely being made. Jaden knows the ENTIRE alphabet and is beginning to sight read. We just bought the program Your Baby Can Read, and I'll keep you posted on how it works. Jaden is now 4 and 4 months. He has known the sign language alphabet for a VERY long time now. He has known the written alphabet for a good 5 months, but started showing us he recognized letters over 1 year ago. So now we've moved onto words. I know that there are children with Down Syndrome who can read much earlier than this as well and I would love to hear from these parents. It's always good to hear the success other parents have and to find out what programs they have used. It's been hard to get Jaden on Video doing his letters because he's become a little rebellious when asked to do things now, go figure. This is the best I could get for now and I promise to upload a more entertaining video next!
ADHD Drugs Cause Hallucinations in Children
Posted by L. Noelle Labels: adhd drugs, mike adams, natural news
From my favorite site, Natural News, Mike Adams does it again with another interesting article about what happens to children when they take ADHD Drugs. If you haven't been to the Natural News website and/or don't subscribe to the Natural News Newsletter, I highly suggest doing so. It is truly one of the most informative, educational sites on the Web today. Click on the link below to read the full article.
ADHD Drugs Cause Hallucinations in Children; Psychiatry Pushes Hallucinogenic Drugs for Profit
Happy Birthday my beautiful boy. Thank you for coming into our lives and for helping to throw stereotypes right out the window. You've changed everyone who's met you for the better and continue to do so every single day. Have you even gone one day without hearing how cute you are? You make us prouder than words will ever begin to describe. Thank you for cleaning up after yourself now, and for making us laugh so hard all the time. Lyla thinks you are the best brother anyone could ever have and as you know, always wants to show you off to all of her friends who are all in love with you. You have the sweetest laugh, voice and smile. It's ok that you don't like to listen all of the time and that you are often up to no good, that's what most kids do. You're one of the smartest kids I've ever met and it's ok that your smarts are saved and shown to those closest to you! We know that you leave the best for us. I know I speak for everyone who knows you when I say, "We Love You Jaden!"
Love, Mommy
P.S. Who knew you would turn into such a huge Ham. Boy do you love the camera and the camera sure does love you. Thank you for always letting me teach you special little tricks and for being such a willing participant and performer. Remember when you would imitate me singing when you were only a few months old? It was then that I knew you were a natural. You make everyone laugh so loud. Especially yourself, right?
You may want to turn down the volume a bit on this one. Jaden gets pretty excited when he sees himself on camera. We wish all of you a wonderful Holiday and hope this coming year greets you with happiness and health!
It's been a while, but for good reason. I just got done opening up a store (5th one) and am deep in the throws of marketing and promoting. It's been about 5 years since my last store and I am so excited to be back in the mix again. This time though, I have a partner and it is making such a huge difference. Anyway, so much to update with Jaden.
We've been teaching him sign language again, because it seems to really help him with his speech. Jaden has always been a great talker and about 2 years ago, we started teaching him signs. But, we found that because he was picking up the signs so easily, we were afraid he wouldn't go on to say the words because enunciating words was much more difficult for him at the time. I told his speech therapist at the time about how quickly he was picking up on the signs, and he seemed to learn faster than anything else we had teached him. She suggested holding off on the signs until he could get his speech enunciation better. So, we did. Well, I started doing the signs again with Jaden about a month ago because now he is speaking in 3 and 4 words clearly and also speaking in sentences (not always so clearly). So we do a sign, say the word and make him do the same. What a difference 2 years makes! He is amazing at the signs, and not only learns and remembers up to 10 new signs a day, he loves doing them. He gets so excited to show you the signs and say the words. It only took him about 4 days to learn the whole alphabet and all of the other signs are a piece of cake for him. It must be the combination of doing, saying and acting out the words that really reinforces everything for him.
So, if you're like me and are waiting for sign language, I can only say this. Don't wait! I wish I hadn't stopped 2 years ago. I can't even imagine how much more advanced his vocabulary may have been had we kept going with the sign language. Plus, the whole family loves doing it! Everyone gets involved and it's very fun. Here's a video of him doing a few signs.
All Paren't Should Read About This Bill
Posted by L. Noelle Labels: patricia bauer, petition, prenatal actCongress OKs Kennedy-Brownback disability diagnosis bill
September 25th, 2008
The House has joined the Senate in passing a measure that disability rights advocates hope will fundamentally change the conversations that are taking place between pregnant American women and their doctors. Passed on a voice vote on Thursday, the bill would provide for accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. President Bush is expected to sign it.
Passage of the measure marks the culmination of an unprecedented bipartisan effort that has joined supporters of abortion rights, led by co-sponsor Sen. Edward M. Kennedy (D-Mass.), with opponents of abortion, led by co-sponsor Sen. Sam Brownback, and disability rights advocacy groups. Kennedy is also a longtime advocate for people with disabilities. While members of this loose coalition may have profound disagreements about what may be acceptable at the end of a pregnancy, they came together around another key question in prenatal care: What kind of information and support should be available to pregnant women if initial testing reveals the presence of a disability?
The question has become more urgent in recent years as more women are postponing childbearing, putting them at a greater risk of having pregnancies marked by genetic and other abnormalities, and as the offer of prenatal testing has become standard care. It is estimated that more than 1,000 prenatal tests are available or in development. Included among them are tests for conditions that are not life-threatening, could be helped by surgery or medical care, or don’t appear until adulthood. The prognoses for people with some prenatally diagnosable disabilities have been improving markedly in recent years, leaving medical professionals scrambling to keep up with changing data.
Down syndrome has led the way in the public conversation about prenatal testing and selective abortion because tests to detect the condition were among the first to be developed, and came into use at about the same time the landmark Roe v. Wade case opened the doors to legal abortion in 1973. Yet medical, social and educational changes have dramatically improved the prospects for people with Down syndrome over the same time period.
The Prenatally and Postnatally Diagnosed Conditions Awareness Act is framed as a bill to strengthen the informed consent process around prenatal testing. It provides for families to receive scientifically sound information about the nature of the condition involved, as well as to help them make connections with support services, websites, hotlines and parent networks. The bill also provides for the development of a national clearinghouse of information for parents of children with disabilities, expansion of peer-support programs, the development of a national registry of families wishing to adopt children with disabilities, and education programs for health care providers who give parents the results of prenatal tests. The measure has a price tag of $25 million over five years.
Speaking on the House floor, Rep. Cathy McMorris Rodgers (R-Washington) described herself as the “proud mother of an amazing baby boy,” one-year-old Cole who has Down syndrome. She portrayed the bill as a disability advocacy measure, calling it “a positive step forward in helping new and expecting parents of children with special needs get accurate information on the real potential of their children.” McMorris Rodgers cited a study by pollster Louis Harris and Associates that found that medical professionals are more likely than any other group to underestimate the quality of life experienced by people with disabilities. In an interview after the vote, McMorris Rodgers said she and her husband Brian received Cole’s Down syndrome diagnosis from a medical team that reviewed a long list of “what might go wrong” with her son, but neglected to acknowledge his possibilities. “There’s so much potential that a child with Down syndrome has,” she said, “and we really fail to articulate that side.”
Opponents of abortion have painted the measure as a pro-life bill. In floor testimony, Rep. Tim Ryan (D-Ohio) said it would reduce abortions by telling prospective parents of children with disabilities that “society will be there to support you. We will bring every resource to bear to ensure that you are able to raise a beautiful baby. Never should a pregnant woman feel that her options are limited by a lack of public support for the types of social services that could help her, her family or her baby.” With current statistics saying that 90 percent of pregnancies with a diagnosis of Down syndrome are aborted, Ryan said that number could be reduced if women were given the support they need and deserve.
Sen. Brownback was even more pointed in remarks in support of the bill on the Senate floor last week. “What we’re trying to do with this bill is to see that more Down syndrome children make it here and get here,” he said, standing in front of a large photograph of Republican vice presidential candidate Sarah Palin and her son Trig, who has Down syndrome. “We’re ready to move forward on this so we can get more of these special kids here.”
Approval of the bill came more than three years after an earlier version was introduced, spurred in part by research that found mothers of children with Down syndrome were sharply critical of the paucity of information they were receiving about their child’s diagnosis from medical professionals. A study by Dr. Brian Skotko in the American Journal of Obstetrics and Gynecology said mothers who received a prenatal diagnosis said obstetricians and genetic counselors gave them scant information that was often out of date and unduly pessimistic. Another study in the journal Pediatrics, also by Dr. Skotko, found similar results among women who had received the diagnosis after their children were born.
It is currently estimated that some 400,000 Americans have Down syndrome, a genetic condition that causes a range of physical and intellectual disabilities. The range and extent of impairment can’t be accurately predicted prenatally. While the bill has been making its way through Congress, the development of prenatal tests has been causing excitement among investors who say the market for accurate testing tools has multi-billion dollar potential. Just this week, the stock of California-based Sequenom Inc. has jumped more than 30 percent on an announcement that it had conducted a successful study of a new prenatal test. Sequenom reported that its SEQureDx test detected Down syndrome accurately in the first and second trimester of pregnancy in about 200 samples with no false positives or false negatives, matching earlier data from another 200 samples.
Until a few years ago, prenatal testing was routinely offered only to women aged 35 and over because it was thought that at that age a woman’s risk of having a child with Down syndrome was roughly equal to her risk of having a miscarriage caused by a prenatal test. Recently, however, the American College of Obstetricians and Gynecologists (ACOG) has issued new recommendations that all pregnant women regardless of age be offered prenatal screening and testing.
Not specifically addressed by this bill is the question of how doctors are themselves being educated about the conditions they may discover through prenatal diagnosis. A recent study published in the American Journal of Obstetrics and Gynecology found that 45 percent of obstetricians and gynecologists rated their residency training regarding prenatal diagnosis to be “barely adequate” or “nonexistent.” Another study, this one conducted by Special Olympics, found that 81 percent of medical school students said they were not getting any clinical training regarding individuals with intellectual disabilities.
An earlier version of the measure, which attempted to establish requirements for doctors to provide accurate information about disabilities to their patients and set penalties for those who failed to comply, met with opposition from medical professionals. There were concerns that political pressures might intrude upon the doctor-patient relationship.
Congressional offices reported getting a flurry of last-minute phone calls from disability advocates organized by groups including the National Down Syndrome Society, National Down Syndrome Congress, Trisomy 18 Foundation and the University Centers for Excellence in Developmental Disabilities.
For Madeleine Will, director of the Policy Center of the National Down Syndrome Society, the bill’s passage marked an emotional moment. “I am thrilled beyond measure,” she said, adding that she hoped it will prompt a shift in the way the nation regards people with disabilities.
“Through providing accurate, updated information about disabilities like Down syndrome to pregnant women, the hope is that they will make a better, more informed decision,” she said. “But the bigger impact will be better understanding on the part of the American people about the nature of disability and the value of these citizens to their families, their communities and to our country.”
OMG! The Bill Finally Passed! Thank you for everyone that signed my Petition! It helped so much along with the thousands of other tireless Mom's, Activists, Parents, Friends and Families along the way! What a victory for our cause! Maybe now parents can get the fair, accurate information and support they deserve prenatally and postnatally! Whoo Hoo!
The Down Syndrome Community Celebrates an Important Victory
Congress Passes the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act
New York, NY (September 26, 2008). After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosis Conditions Awareness Act, during this last week before Congress adjourns . The legislation has been an extremely high priority for the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). These organizations and individuals with Down syndrome and their families across the country are convinced there is a need for physicians and other health professionals to provide parents who receive a prenatal or postnatal diagnosis with updated, evidenced-based information about Down syndrome.
U.S. Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), original co-sponsors of the bill, came together to pass S. 1810. The bill passed the Senate by unanimous consent on September 23rd and passed the House by a voice vote on September 25th.
The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The information that is all too often being provided in these situations is out-dated and inaccurate. The treatment options, functional development, opportunities and accomplishments of individuals with Down syndrome have improved dramatically over the years, yet decades old stereotypes still persist. It is critically important for healthcare professionals, families and society to update their knowledge and their perceptions about individuals with Down syndrome.
NDSS, NDSC and affiliate groups across the country, have worked for almost three years to bring the bill to passage. J. David Hoppe, NDSS Governmental Affairs Committee Chair, worked tirelessly with Members of Congress to ensure the bill would be considered despite competing time demands in Congress. “With one small eight-page statute we have the power to brighten the future for people with Down syndrome and their families, by breaking stereotypes and dispelling myths”, states Hoppe.
NDSC and NDSS and appreciate the hard work of the Members of Congress who championed the bill in the Senate and the House of Representatives—Senators Edward Kennedy and Sam Brownback, Congressmen James Sensenbrenner and Tim Ryan.
Other members of Congress who provided invaluable assistance and support- Senator Harry Reid, Speaker Nancy Pelosi, Majority Leader Steny Hoyer, Senator Mitch McConnell, Congressman James Clyburn, Minority Leader John Boehner, Congressman Roy Blunt, Congressman John Dingell, Congressman Joe Barton, Senator Jon Kyl, Congressman Pete Sessions and Congresswoman Cathy McMorris Rodgers.
NDSS and NDSC would like to thank the members of the Trisomy 18 Foundation and their leadership who were diligent and stalwart supporters in the effort to pass the bill.
NDSC and NDSS would also like to thank their affiliates and the thousands of individuals with Down syndrome, parents, families and friends who have worked tirelessly during the three-year effort to pass the legislation.
Help Pass The Prenatally & Postnatally Diagnosed Condition Act!
Posted by L. Noelle Labels: legislation, petition
Taken Straight From The Press Release! Please read below. We are all disgusted with the current Prenatal & Postnatal diagnosis procedures. Over 80% of New and Expecting parents are horrified with the lack of support or information regarding the a diagnosis of their new or unborn baby. Most of the time the only suggestion is, termination. There is rarely any counseling, support or updated information given to parents! This has to stop, and this Bill can help stop eugenics from being played out by Dr's to the degree that it is. This is why I wrote my Petition! Well the Bill has finally after 3 years, passed the Senate! Help it pass! Make a phone call! Just read below at what you can do to help!
URGENT ACTION NEEDED IN THE HOUSE OF REPRESENTATIVES
Take Action!
Pre-Natal Screening Bill Passes Senate
TO: NDSC & NDSS Members and Affiliated Parent Groups
FROM: Susan Goodman, Director Governmental Affairs, NDSC; Madeleine Will, Vice-President, NDSS Policy Center
DATE: September 24, 2008
URGENT ACTION NEEDED IN THE HOUSE OF REPRESENTATIVES
Pre-Natal Screening Bill Passes Senate
Call Congresswoman Pelosi (D.CA) and Congressman Hoyer (D.MD)
Yesterday, September 23, 2008 the Senate passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act, (S. 1810) known as the Kennedy-Brownback bill. Immediate action is needed in the House of Representatives to pass this proposed legislation during this session of Congress.
Call Congresswoman Nancy Pelosi, Speaker, House of Representatives, 202-225-0100 and Congressman Steny Hoyer, Majority Leader, House of Representatives, 202-225-3130, with the following message:
Please take up and pass the Prenatally and Postnatally Diagnosed Conditions Awareness Act, S. 1810, under unanimous consent or suspension of the rules by the end of the week.
We will keep you posted as events unfold and as further action is needed.
If you have questions, please contact Susan Goodman at susang1961@aol.com or Madeleine Will at mwill@ndss.org.
Please read about this organization and do everything you can to pass on the word. There can never be too much awareness brought to this subject. A woman named
Chessia Kelley runs this phenomenal organization. Please read about it below.
My organization, International Medical Corps, was nominated to be one of the Top 25 in American Express' Members Projects, "Saving the Lives of Malnourished Children." Our project was chosen out of 1,190 projects and is now eligible to receive up to $1.5 million to help feed hungry children, but the voting ends next Tuesday and we need your help to spread the word. I've put together this blogger friendly web release explaining everything.
http://
New Study Proves Effectiveness Of Supplementation With Down Syndrome
Posted by L. Noelle Labels: down syndrome, supplementation
- There are many important studies going on in Universities across the country testing the effectiveness of supplementation and Down Syndrome. Study after study seems to keep showing the same results. That people with Down Syndrome can benefit tremendously from supplementation both with their immune systems and in their overall development.
Serum cholinesterases in Down syndrome children before and after nutritional supplementation.
Institute of Genetics & Hospital for Genetic Diseases, Osmania University, Begumpet, Hyderabad 500016, Andhra Pradesh, India.
INTRODUCTION: Down syndrome (DS) children have different degrees of developmental abnormalities associated with mental retardation. A cascade of pathological changes triggering alterations in cholinesterase-mediated functions seems to be the cause of neuronal and muscular dysfunctions, such as memory loss, disturbed cognitive skills, and language impairment in virtually all DS individuals, but there are currently no efficacious biomedical treatments for these central nervous system-associated impairments. The present study aimed to evaluate the effects of nutritional supplementation on cholinesterases in serum of DS children. METHODS: Activities of acetyl- and butyrylcholinesterase were analysed in the serum samples of 40 DS children, along with an equal number of age- and sex-matched controls under study. RESULTS: The activities of serum acetyl- and butyrylcholinesterase were found to be low in DS children before nutritional supplementation, compared to controls, and showed considerable improvement after six months of supplementation of zinc in combination with antioxidant vitamins and minerals. A significant improvement was also observed in cognitive skills and behavioural patterns after nutritional supplementation. CONCLUSION: The present pilot study suggests the significance of early intervention with nutritional supplementation in DS children to ameliorate the severity of this disorder.
PMID: 18695865 [PubMed - in process]
Don't Give Your Daugthers The HPV Vaccine!
Posted by L. Noelle Labels: hpv vaccine, merck, mike adams, natural news
I subscribe to Natural News, by Mike Adams, the self appointed "Health Ranger". He is truly an advocate for environmental issues and natural products, holistic cures and the like. He puts out an extremely informative news letter and one of the issues he is passionate about, is one of the biggest money making scams of our generation. The over-vaccination of our children and the governemnt making money from the pharmaceutical companies rallying mandated vaccines for everyone.
This is an issue I feel passionately about and have researched hundreds and hundreds of hours of material pertaining to vaccines. The most worthless, biggest money maker so far, is the HPV vaccine, proving to be one of the most un-necessary, dangerous and deadly of all vaccines ever introduced. I would never, ever, ever give my own daughter this needless, fraudulent vaccine and I hope you read everything you can about this! Read about Merck and the powerful lobbying efforts they deploy to get vaccines mandated!
http://www.naturalnews.com/report_HPV_Vaccine_0.html
Gluten-Free Giveaway on MyHealthiestLife.Com
Posted by L. Noelle Labels: FREE products, gluten free, my healthiest life
This week, we are giving away 24 boxes of my absolute personal favorite gluten-free crackers! Mary's Gone Crackers, a fantastic Gluten-Free company is excited to introduce you to 4 different gluten-free products that they offer. These crackers are made with the most fantastic ingredients including whole grain brown rice, organic quinoa (keen-wa: a high protein seed/grain), organic flax seeds and organic brown sesame seeds, with no added fat. Trust me when I say, these crackers are delicious!
You can win 1 of 24 boxes of either the Original or Herb Cracker or their newest product, Sticks & Twigs in Chioptle Tomato or Sea Salt. Wait till you try these they are Fabulous!
"Protein Linked With Down Syndrome May Help Treat Breast Cancer"
Posted by L. Noelle Labels: breast cancer, down syndrome, protein, researchSomething I read a while back which I've read before. Very interesting, indeed.
Protein linked with Down Syndrome may help treat breast cancer
Submitted by Mohit Joshi on Tue, 02/05/2008 - 07:06.Washington, Feb 5: 
It is already known that Down Syndrome is caused when an individual has an extra copy of the 21st chromosome, giving them a total of three instead of the normal chromosome pair.
And now with advancements in medical care, people with Down Syndrome are living longer and healthier lives.
Along with this improvement came the observation that individuals with Down Syndrome have a significant decrease in risk for several types of tumours.
The most surprising observation is that women with Down Syndrome are 10-25 times less likely to develop breast cancer.
Scientists believe that this effect is due to the presence of one or more ‘tumour suppressor’ genes on chromosome 21. However, the identity of such genes has not been known, until now.
“Years of research into the genetics of Down Syndrome have helped us to discover a very important gene on chromosome 21,” said Dr. Weston Porter, associate professor in the Veterinary Integrative Biosciences Department.
“This gene, called Single-minded 2 or SIM2 is thought to play an important role in Down Syndrome by regulating neuron growth in the developing brain. Based on its developmental role, we hypothesized that SIM2 may also be involved in breast cancer, which is essentially a disease of uncontrolled growth,” he added.
For past five years, Porter and his colleagues have been using human breast cells and mouse models to validate this hypothesis, and what they have found they consider it very promising.
SIM2 is lost or suppressed in a majority of human breast tumours, and if the gene is deleted, it triggers rapid tumour growth in mice.
However, the process by which SIM2 suppresses breast cancer is complex and not fully understood.
This same protein, which might hold so much promise for breast cancer treatment, is also thought to contribute to the negative effects of Down Syndrome.
“As we move forward, it will be important for us to understand the circuit of SIM2 and how it is turned on and off. In light of the available data on breast cancer incidence in the Down Syndrome population and our experimental data, knowing how to turn SIM2 expression on and off and identification of down-stream targets should have great therapeutic value,” Porter said.
Although the study is in its early stages, it still represents a promising weapon in the fight against breast cancer as it sheds light on a previously unknown target for which to shoot.
The study is published in the journals Molecular and Cellular Biology and Carcinogenesis. (ANI)
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