Showing posts with label teresa cody. Show all posts

Thursday, April 28, 2011

Is There a CMF Mini-Conference Near You?

My husband and I attended the mini-conference in Madison, WI in November 2010. It was great to be able to meet parents on the protocol and to be able to ask Teresa Cody, founder of The Changing Minds Foundation, questions.

Orlando, FL November 12, 2011

The Down Syndrome Foundation of Florida has partnered with The Changing Minds Foundation to bring families in Florida an informational presentation/one-day seminar about the CMF protocol. Dr. Teresa Cody will be the main speaker and she will present the science behind each item of the protocol to parents, educators and medical professionals. We will also get to hear from Joanne Mothes, a special education teacher who works exclusively with children and adults with Down syndrome. She will shed some light on the differences she sees in children that take the CMF protocol because half of her group of students takes the protocol and half of them do not. The seminar will be in Orlando on November 12, 2011 from 9:00am to 3:00pm and registration will open on September 30, 2011. You can find the details and registration at http://www.dsfflorida.org/DSFF_Events.html

I'll be there! Anyone else coming??

Want Teresa Cody to come talk to your local DS community?

If you are willing to coordinate the event, just send CMF an email to changingmindsfoundation@gmail.com and they will happily add your town to their schedule.

Here are the most recent three events:

Down Syndrome Association of Houston

7015 West Tidwell, Bldg. G, Suite 108

Houston, Texas 77092

713-682-7237

July 23, 2011

9:00am - 11:00am (with lunch afterward) (in English)

Spanish Version starts at 1:00pm (given by translator)

Teresa will be there to answer questions afterward

Monday, May 16th, in Deer Park, TX.

Both Teresa and Joanne Mothes, special education tutor of children with Down syndrome, will speak to parents, teachers, doctors and anyone else interested in hearing about the CMF protocol.

Teresa will present the details of the protocol along with the science behind it. She will also be sharing new information on sleep in relation to DS as well as a solution she has found.

Joanne will share her experience as a special education tutor since half her students are on the protocol and half are not.

Gerrie Bourque and her 14 year old son, Tyler are hosting. He has just started the CMF protocol and his mother says she is amazed at the changes she is seeing in her son! She was so excited that she wanted to have Teresa come and share the information with her local friends and DS group.

Read more about Tyler.

Seminar Information:

Monday, May 16, 2011

7:00pm to 9:00pm

Deer Park Community Center

610 San Augustine

Deer Park, TX 77536

No charge to attend

Donations will be accepted at the door

Flyer for Deer Park

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Evansville, Indiana hosts CMF on June 25th. The Down syndrome Parent Network called SMILE on Down Syndrome, is happy to welcome Teresa to speak to their group.

In addition to answering questions and concerns from the audience, Teresa will play a video of Joanne Mothes' presentation from their conference last July, entitled "Draw a Line in the Sand". In her talk, Joanne compares the students that are on the CMF protocol to those who are not. The difference is astounding!

You will also hear from Miriam Kauk, a CMF parent since 2008 and founder of my favorite website: einstein-syndrome.com. You will also get to meet her 18 year old daughter, Mary who has been on the protocol for over two years.

When: June 25, 2011

Where: Wired Coffee House

111 NW 4th Street

Evansville, IN 47708

Time: 9:00am to 12:00pm

(Central Time Zone)

Check-In at 8:30am

Cost: No Charge -- Donations Only

Although the seminar is FREE, please register your attendance so they can be prepared for the number of people to expect. Thank you!

To Register:

http://www.planetreg.com/E413943688

Event Flyer

Wednesday, March 30, 2011

Cure for Down Syndrome?

This is a blog entry written by Teresa Cody, the founder of the Changing Minds Foundation:

Myth: Down syndrome can never be cured.

Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Who said this?

A few years ago, I named a website 'Cure Down syndrome' and was chastised for it. I literally got hate emails. How dare you say cure in connection with Down syndrome. There is nothing to cure, is what the emails argued.

I named it that on purpose, to see what would happen. Now, five years later, the big boys have it on their website. Granted it is all the way down at the bottom of the page, but it is written in black and white.

Have you guessed yet?

The truth is I'm very happy they are saying the word cure. The definition of cure is: Cure: 1. To heal, to make well, to restore to good health.

Who doesn't want good health?

There are definable problems with Down syndrome and to restore these problems to a more normal, healthy function is a good thing. For example, increasing the ability to learn is a good thing. The Changing Minds Foundation is dedicated to improving learning and memory through modern medicine. It is as simple as restoring functions in the brain to a more normal level. So, is it a cure?

The only problem with the word cure is that people seem to think it means to eliminate the problem in its entirety. So, a person with Down syndrome is only cured if the chromosome is completely removed from every cell. But this is not the true meaning at all. Cured means to restore to good health.

Someone is cured of cancer when the symptoms of cancer are gone, not when the cause of the cancer is eliminated. Many cancers, for example, are due to genetic causes. Hence, the question by the doctor about your family history. They don't ask because they are interested in genealogy. Your family history is important to your future health because of the genes you may carry.

So, who was it that made this statement?

Myth: Down syndrome can never be cured.

Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

It was on the NDSS, the National Down Syndrome Society's website.

http://www.ndss.org/index.php?option=com_content&view=article&id=59&Itemid=76

The only difference between NDSS and CMF is we think the future is now. Thank you to all the dedicated research scientists for making the future NOW.
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Down syndrome 'cure' might be within reach of scientists

By Carey Goldberg, Globe Staff | January 27, 2004

A decade ago, any researcher who dared to suggest that Down syndrome could one day be "cured" was heading straight for the scientific fringe. Mainstream consensus went: Down syndrome, the leading genetic cause of mental retardation, was too complex a problem even to approach.

Now, although that goal remains beyond the horizon, a growing number of reputable researchers at universities such as Stanford and Columbia say they can foresee a time when they'll be able to break the link between Down syndrome and retardation.

Armed with an array of new tools -- from genome mapping and stem cells to genetically engineered mice and a deepening understanding of Alzheimer's disease -- they are trying to pinpoint just how the extra chromosome of Down syndrome leads to retardation and a host of other problems.

Once they figure that out, the thinking goes, perhaps they can someday help people with Down Syndrome gain some IQ points, or even develop normal intelligence. There is a precedent: Certain rare genetic metabolic diseases once meant certain retardation. Now, those babies can grow up mentally normal, thanks to diagnosis as newborns, pills and diet restrictions.

"The whole research scene has changed dramatically" since the extra chromosome, Chromosome 21, was mapped in 2000, said Suzanne Armstrong, spokeswoman for the National Down Syndrome Society.

"We realize that any potential treatments resulting from research at the genetic level are years away," she said, "but we're very hopeful."

More than 350,000 Americans have Down syndrome and the moderate or mild retardation that generally goes along with it. They are at higher risk for heart defects, childhood leukemia and other physical problems, too. They also tend to have a distinctive look -- short stature, small nose, a relatively flat face.

The life expectancy for people with Down syndrome has doubled in the last two decades or so, from 25 to 49 years; and the sweeping movement to raise children at home instead of in institutions has greatly improved the quality of those longer lives, parents and advocates say.

Sheila Cannon, coordinator for the Down syndrome center at Children's Hospital in Pittsburgh, said the progress on health and quality-of-life issues since her daughter, Kerry, was born 17 years ago has already been stunning: Back then, she was told, "Down Syndrome is what it is."

Now, it seems, that may not always be true. Prevention of mental retardation "may not happen within the next few years, and it may not even be helpful to my daughter, but it probably would be helpful to the generations that follow," she said. "That's how I look at it."

Getting there, advocates and researchers say, will require much more of a financial commitment from the federal government.

In recent years, federal funding for Down syndrome research has averaged about $10 million a year; the National Down Syndrome Society is now pushing for twice that sum. By comparison, Alzheimer's disease, which affects more than 4 million people, got $600 million from the National Institutes of Health alone in 2002.

But some of that river of Alzheimer's money is trickling over to Down syndrome research because of an intriguing connection: The brains of virtually all middle-aged people with Down syndrome show telltale signs of Alzheimer's disease, and one of the genes on Chromosome 21 is linked to production of beta-amyloid, a protein that accumulates in abnormal form in Alzheimer's brains.

The beta-amyloid connection raises an exciting prospect, said Dr. Michael Shelanski, codirector of the Taub Institute for Research on Alzheimer's disease at Columbia University:

It could be, he said, that a child with Down syndrome becomes retarded simply because "the child is developing with a flood of beta-amyloid, so they don't learn very well, they don't make synapses very well."

"We're beginning to study this in the mouse," he said, and eventually, perhaps, drugs that will be developed to sop up extra beta-amyloid in the brains of Alzheimer's patients could also be used to reduce retardation in children.

Human research is beginning as well. In a 2002 article in the journal The Lancet, researchers took two sets of post-mortem fetuses, one with Down syndrome and one without, and compared the gene activity of their neural stem cells. They found that certain genes that help brain cells develop and communicate were disrupted only in the Down syndrome fetuses. A Lancet commentary noted that those genes could turn out to be targets for drug and gene therapy in humans.

But that will take years to determine. In the meantime, a few clinical trials have begun to test existing drugs to enhance brain function in people with Down syndrome, largely on the premise that whatever shows promise improving learning and memory with Alzheimer's disease might work in Down syndrome as well.

Pfizer, which makes an Alzheimer's drug called Aricept, is testing it in dozens of people with Down syndrome around the country, checking for any noticeable improvement in memory, attention, language and more.

Results of previous studies of Aricept have tended to be modest, however, said Dr. Ira Lott, director of pediatric neurology at the University of California at Irvine. "The problem with that whole class of medication is that it's temporary," he said. "It's like whipping a tired horse -- the horse runs faster and then poops out."

He and colleagues are now working on a study using high-potency antioxidants -- such as vitamins E and C -- for people with Down syndrome. Already, the vitamins have shown some promise in improving learning and memory in Alzheimer's patients, he said.

Researchers tend to have an easier time imagining an antiretardation treatment that begins at birth -- or even before -- than one given in adulthood. But an adult treatment is not impossible, said Dr. William C. Mobley, director of a new center for research on Down syndrome at Stanford University. The effects of the extra chromosome "may or may not be reversible," he said. "We just don't know."

Years ago, a scientist stating that the retardation of Down syndrome could be prevented was "a voice in the wilderness," said Dr. Leonard E. Maroun, a professor emeritus of microbiology and immunology at the Southern Illinois University School of Medicine.

That is changing a bit, said Maroun, who has worked for years on the role that interferon, a virus-fighting protein used to treat some cancers, may play in Down syndrome. He has patented the idea of anti-interferon therapy and is developing an anti-interferon drug that he plans to sell through his Beverly-based start-up, Meiogen Biotechnology.

"The general public's image of Down syndrome is one of hopelessness," Maroun said. But, "I'm virtually certain we've got something that will really help. Maybe I'm wrong, but certainly there are ideas out there that make it plausible that we could help these kids, and could encourage scientists to get into this area."

Carey Goldberg can be reached at goldberg@globe.com.

Sunday, March 20, 2011

Changing Minds Foundation Protocol

Down syndrome is a very complicated genetic problem. The extra chromosome throws many processes of the body off. (400 at last count.) It's like trying to bake a cake when someone has gone in behind your back and added a bunch of extra stuff, replaced things with the wrong ingredients, etc. Researchers recently figured out what some of the extra stuff is (like too much baking powder, not enough salt, the wrong yeast, etc.). A good baker can tweak the recipe to compensate for the extra ingredients so that the cake will still come out light, fluffy and delicious. That's what the Changing Minds Foundation (CMF) protocol and Targeted Nutrition Intervention (TNI) does for our children.

So many different things can cause mental impairment in our kids (hypothyroidism, lack of oxygen in sleep, lack of REM, lack of production of dendrites in the brain, etc.) so we need to attack each one to prevent damage to their brains.

I use the Changing Minds Foundation Protocol for Jett as well as TNI. It is a list of supplements/ medications that has been gathered (a protocol) for treating a lot of the symptoms of DS.

The first imbalance you can right is through the use of ginkgo.... (I will tell you all about the other parts too, I just don't want to overwhelm you!!)

The website http://www.changingmindsfoundation.org/documents/links.html lays out the protocol. Actually more has been added but Teresa Cody hasn't made it all public yet. You can check out the Complete Protocol here, that Jett uses and will be using.

Related Posts:

CMF Mini-Conference Near You

Changing Minds Foundation Protocol

Cure for Down Syndrome?

Jett's Complete Supplement List

Gingko: The Hows and Whys for Down Syndrome

Prozac Cures Lazy Eye!

15 Things A New Parent Should Know

Why Rhodiola Rosea?

CMF Protocol: Prozac

Fermented Cod Liver Oil

Coconut Oil Info and Recipes

Fats & Oils

EGCG Green Tea Extract

Longvida Curcumin

Prozac & Vision Problems in DS

Baby Names