Way To Go....Tim McGraw!!!

Did you hear about what happened at the Tim McGraw concert in Atlanta??  He was singing a song to his wife (Faith Hill) and daughters, called "You Are So Beautiful", when he saw a young fan singing along.  This girl has Down syndrome, and he invited her on stage and finished the song by serenading her.  Then he autographed the guitar he was playing and handed it to her.  Check out the video below....and the photo!  What a great guy you are Tim McGraw! :)

Photographer/Mom Pushes for More Ads To Feature Kids with Disabilities

Neal's tutor, Kathy Griffith, found this article and sent it to me.  It is a great story about a mom who is also a photographer.  She has 5 sons and 1 daughter.....her daughter has Down syndrome.  She wanted to celebrate her daughter and began taking photos of her.  She asked several businesses if they would use a child with a disability in their ads.  To her surprise and delight......they said yes!  Read the article , and then go to the website called Changing the Face of Beauty .  You will see lots of amazing photos of children with disabilities. 


“These people are part of our society and unfortunately, in the advertising and media world they’re kind of forgotten,” says Driscoll, of Palos Park, Ill., who emails companies and urges them to take a look.
“We are influenced by imagery,” she says. “The more people are exposed to individuals that might be deemed different, the more comfortable they will be and more opportunity will open up for all people living with a disability.”

Way to go Katie Driscoll -- You ROCK!!

Dear Future Mom Expecting a Child With Down Syndrome....

Are you familiar with World Down Syndrome Day?  It is always on March 21st, and it is a day for people with DS to organize and participate in events that bring about awareness of DS and inclusion of people with DS.  In support of WDSD, several organizations collaborated on this amazing video.  This is for all current moms AND all future moms of children with Down syndrome.  It will warm your heart!

Every Little Girl Needs A Doll......

A young girl with Down syndrome, looking through a magazine, told her mother "none of these dolls look like me!"  Her mother, Connie Feda, decided to fix that.  She created some dolls with facial features similar to those in DS, using her daughter as a model.  The dolls debut on March 1st and they are older children dolls, not babies. There will be 5 girls and 5 boys.  See video below:

http://www.huffingtonpost.com/2013/03/08/dolls-for-downs_n_2811581.html#slide=2195258

DS Hero Starts Scholarship !!

Many of you have read about the waiter, Michael Castro from a small Texas town, who defended the little boy with Down syndrome when another customer was rude to him.  The other customer was quoted as saying "Special needs kids should be kept in special places".  The waiter came to the defense of Milo Castillo, the little boy with DS, and he refused to serve the rude customer.   This amazing waiter has become a hero and not only has he received all kinds of notariety, but also donations!  Fans of Mr. Garcia have donated $1,145.00 to him for his courageous act. 

Guess what?  He donated ALL the money to the Rise School of Houston, a  preschool for special needs children that little Milo attends. 

Please read the article for yourself at the link below:

http://www.examiner.com/article/waiter-who-defends-boy-with-down-syndrome-starts-scholarship

Boy With DS is East Texas Mayor For 8 Minutes!!!

You will love this story!  It is about an 8-year old boy with Down syndrome who is appointed as the mayor of Gladewater, TX, for 8 minutes during a city council meeting.  He opens the meeting by asking the previous mayor, Mr. Harold Wells, to pray, which he does, and then Ryan recites Psalm 23 for everyone!  He is an amazing little boy!  Ryan's mom, Colleen, found our website online the other day and wanted to share her son's story with our group.  I have a reply out to her asking if Ryan is taking any supplements.  I will get back to you all with that answer.

I have given you the link below to the ABC news story about Ryan and his appointment as Mayor!

http://www.kltv.com/story/19918453/eight-year-old-becomes-etx-mayor

Happy New Year everyone!!!

Forced Abortions of DS Called For In UK News !!

Just had to share these articles I read today that came in on my Google Alert.  It is absolutely abhorrent !!!  The idea that a political candidate from the United Kingdom's Independent Party (Ukip), has called for compulsory abortions of fetuses with Down syndrome as well as free euthanasia advise for people over 80 years old who might have very costly medical expenses. 

Link to article in The Independent

Link to article in BBC News


Please read these articles and then comment or share them on facebook, twitter, etc. to get the word out!
It is absolutely disgusting that anyone would suggest forcing parents to abort their children!

The Pure Joy of Independence!!

This is a video of Mac Austin playing the game of Trouble with his little brother, Griff.  His mother sent this to me and she wrote the quote below:

"Hey ladies.... A little brag here. This is a video of Mac and Griff playing the game Trouble totally independently!! Taking turns. Moving his own pieces. This is a huge step for Mac! And I just loved watching them play a game by themselves!!!"

Mac is 8 years old and he has been taking the CMF protocol, along with some additional supplements,  for almost two and a half years.  He is doing amazingly well.... wouldn't you agree? 

Fluoxetine Rescues Quantity and Quality!!!!

Every now and then I plug in 'Down syndrome' into pubmed and let the search engine fly. This morning this is what I found: Brain Pathol. 2012 Jul 23. doi: 10.1111/j.1750-3639.2012.00624.x. Early pharmacotherapy with fluoxetine rescues dendritic pathology in the Ts65Dn mouse model of Down syndrome Guidi S, Stagni F, Bianchi P, Ciani E, Ragazzi E, Trazzi S, Grossi G, Mangano C, Calzà L, Bartesaghi R. Department of Human and General Physiology, University of Bologna, Italy. Abstract DS is a genetic pathology characterized by brain hypotrophy and severe cognitive impairment. Though defective neurogenesis is an important determinant of mental disability, a severe dendritic pathology appears to be an equally important factor. A previous study showed that fluoxetine, a selective serotonin re-uptake inhibitor, fully restores neurogenesis in the Ts65Dn mouse model of DS. The goal of the current study was to establish whether fluoxetine also restores dendritic development. In mice aged 45 days, treated with fluoxetine in the postnatal period P3-P15, we examined the dendritic arbor of the granule cells of the dentate gyrus (DG). The granule cells of trisomic mice had a severely hypotrophic dendritic arbor, fewer spines and a reduced innervation than euploid mice. Treatment with fluoxetine fully restored all these defects. In Ts65Dn mice we found reduced levels of serotonin that were restored by treatment. Results show that a pharmacotherapy with fluoxetine is able to rescue not only the number of granule neurons but also their "quality", in terms of correct maturation and connectivity. These findings strongly suggest that fluoxetine may be a drug of choice for the improvement of the major defects in the DS brain and, possibly, of mental retardation. © 2012 The Authors; Brain Pathology © 2012 International Society of Neuropathology. PMID: 22817700 [PubMed - as supplied by publisher] Say no more......

Thank You Note From Pocatello!!!

Hello Teresa,

I want to thank you for taking the time to travel to Pocatello for your presentation.  Since my 2 year old was born (with Down syndrome), I have been searching for 'something more' than practically nothing... When I saw your website, I became truly hopeful that there actually was something biological to accompany a treatment plan.  This makes sense to me. I am a fix it girl...I don't settle ' because that's how it's always been',  and I see my personality in you.  I am so grateful that your medical background allowed you the path to take necessary steps to begin physiological questioning, and your mom experience allowed you to take a risk because mamas do what they have to do to protect their kids and anything to help them be successful.  We have already begun our journey toward a brighter future!

Thank you and your sweet team for your time, dedication and effort!
Parent from Pocatello, ID

Pocatello Welcomes Changing Minds!!!

Our Next One-Day Seminar for the Changing Minds Foundation will be on June 23, 2012 from 9:30am to 3:30pm in Pocatello, Idaho.  Our hosts will be Maria Neumann, Jodi Williamson, and the South East Idaho DS Support Group.  We will be meeting at the Marshall Public Library, 113 South Garfield, Pocatello, Idaho 83204.  There is no charge for the seminar --Donations only!  Lunch will be available to attendees for $10 per person.  It will be catered by Dutch Oven Delights.  You can register for this seminar and get all the details at the link below.  We hope to see you all there!!  Please let us know if you have questions 281-341-0101.   (Photo is MaKenna age 4yrs.)

                  Register Here

This is a note that was sent to us from a parent who attended the Butterfly Flutter By.  Her son is on the CMF protocol and doing very well!  Below is a conversation she had with him one night before bed:

Son: I love you to the moon and back.
Me: I love you to Jupiter and back.
Son: I love you to Pluto and back. Mommy, is Pluto cold?
Me: yes, very cold.
Son: why is Pluto cold?
Me: because it is so far from the sun it never gets warm, like when the sun warms us here on Earth.
Son: And is Jupiter cold, too?
Me: Yes – it is a big cold ball of gas – not solid like the Earth.
Son: So Jupiter is a cold planet and is made of gas, not solid (he pauses to think) but does Jupiter rotate around the Sun?
Me: (smiling) Yes, it actually ‘revolves’ around the sun, but yes.
Son: what does revolve mean?
Me: (still smiling) it’s the word we use to say it goes around the sun.

Why was I smiling – this was a conversation I was having with Warren, my 8yr old child who happens to have been born with Down syndrome.

Jury Awards Couple $3 Million in "Wrongful Birth" Law Suit

"This past week a jury awarded nearly $3 million to a couple whose daughter was born with Down syndrome even though a prenatal test found she didn't have the chromosomal abnormality."
(See rest of article below from OregonLive.com)

This is just so sad!!!! It is unbelievable that the jury voted 12-0 that the couple should get the money!! I thought we were more interested in wrongful death.....it appears that some are now concerned with "wrongful birth". What is this world coming to?????

http://www.oregonlive.com/portland/index.ssf/2012/03/jury_rules_in_portland-area_co.html

Another Look at Ginkgo Biloba

Ginkgo biloba may help improve memory, and could even protect against Alzheimer's.

September 1 , 2006
Researchers found significant improvement in verbal recall among a group of people with age-associated memory impairment, who took the herbal supplement ginkgo biloba for six months, when compared with a group that received a placebo.

The UCLA study used positron-emission tomography (PET) and found that for people taking ginkgo biloba, improved recall correlated with better brain function in key brain memory centres.

However, actual changes in brain metabolism, measured by PET for the first time, did not differ significantly between the study's two volunteer groups. Researchers noted that although all volunteers taking ginkgo biloba experienced better verbal recall, a larger sample size might be needed to effectively track brain metabolism results.

"Our findings suggest intriguing avenues for future study, including using PET with a larger sample to better measure and understand the impact of ginkgo biloba on brain metabolism," said Dr. Linda Ercoli, lead author of the study and an assistant clinical professor at the UCLA Neuropsychiatric Institute.

Gingko biloba is a Chinese herb often used as a dietary supplement to treat memory loss. The UCLA study and previous controlled clinical trials on ginkgo biloba's effects on verbal recall have yielded conflicting results.

"The research also raises questions regarding the significance of supplement quality and treatment duration," said principal investigator Dr. Gary Small, a UCLA professor on aging and director of the Aging and Memory Research Center at the UCLA Neuropsychiatric Institute. "The Food and Drug Administration does not regulate dietary supplements, and the quality of retail supplies varies widely. We used only the highest grade of ginkgo biloba in conducting our research."

To my surprise and delight I have not found this to be the case. I have found herbal products very consistent. 

Small also noted that the six-month UCLA study is one of the first to measure the effects of ginkgo biloba over a longer period of time. Most previous studies have measured the effect of the supplement over 12 weeks or less.

This is a very important point. Most people would be surprised to find out most studies are conducted in very short time frames. Normally, less than 12 weeks. 

The study examined the impact of ginkgo biloba, compared to a placebo, in 10 patients, aged 45 to 75, who did not have dementia but complained of mild age-related memory loss. Four subjects received 120 mg of ginkgo biloba twice daily, and six received a placebo or inactive substance such as a sugar pill.

Researchers used cognitive tests to measure verbal recall and PET to measure brain metabolism before and after the treatment regimen. Magnetic resonance imaging was used to determine regions of interest to be examined by PET.

Funding for the study was provided by Dr. Willmar Schwabe GmbH & Co., the John Douglas French Alzheimer's Foundation, the Louis and Harold Price Foundation, the Larry L. Hillblom Foundation and the UCLA Center on Aging.

A study in France, published in the Journal of Gerontology, has revealed interesting results about the role of Ginkgo special extract EGb 761 in the prevention of Alzheimer's disease. Cognitive performance appears to be maintained for longer as a result of long-term treatment with Ginkgo special extract EGb 761. There also appears to be a positive effect in preventing the occurrence of Alzheimer's disease.

Very important point for us with loved ones with Down syndrome.

The primary objective of the Epidemiology of Osteoporosis (EPIDOS) study, a large-scale prospective multicentre study, was to investigate the risk factors associated with femoral neck fracture in elderly women. As numerous health-related data, including drug therapy, were recorded for the subjects over a period of 4 to 7 years, the study data bank lends itself to further analyses. The data analysis presented here investigated factors associated with the development of Alzheimer's disease.

The study enrolled a total of 7598 subjects of at least 75 years of age, 1462 of whom were in the Toulouse centre. On completion of the study, data on the cognitive status of 714 patients in the Toulouse centre were available. 414 who had no cognitive impairment at all on inclusion in the study (score of at least 8 in the Pfeiffer test) were selected from this patient group. Of these, 345 women were still cognitively unimpaired by the end of the study, 69 had developed dementia of the Alzheimer's type.

Interestingly, the women who still had their full cognitive faculties had taken medications such as the Ginkgo special extract EGb 761 [another name for Ginkgo Biloba] or nootropics to stimulate blood circulation (category C4A medicines) significantly more frequently than the women who developed dementia. Additionally, the healthy women significantly more often had been taken these drugs for over 2 years or longer than the dementia patients. In contrast to the other C4A medicines, evidence of the anti-dementia effect of EGb 761 became apparent after only one year of taking this substance.

This finding is significant. It is long term use that made the most difference. So, even if you don't SEE a difference in symptoms know it may help reduce dementia in Down syndrome as well as the elderly.

The findings of this study give every reason to believe that long-term treatment with Ginkgo special extract EGb 761 enables cognitive performance to be maintained for longer, and indicate that the development of Alzheimer's disease can be prevented or at least delayed. Delayed is GOOD!

Original source:http://www.50connect.co.uk

The Facts Hurt

I saw this news report from the UK. We need to face facts and know Alzheimer's is coming. In my view, the only logical choice is to try a preemptive strike. Let's Heal the brain as much as we can before adulthood. It may not be enough but doing nothing makes me crazy. I suppose I have more fear of the future than I do of using medicine in the present.{ The video loads slowly but it is worth waiting for.}
Watch the report here

New Imaging Shows Down Syndrome Is Slammed With Alzheimer's and We Can See It

Note: My comments in Pink and important STUFF Highlighted

Reported This Week:

Brain scan identifies patterns of plaques and tangles in adults with Down syndrome

		IMAGE: This is a representative PET-FDDNP brain scans of study subjects. Control subject shows minimal binding compared with other subjects. The older Down syndrome (DS) subject shows higher binding than the... Click here for more information.

In one of the first studies of its kind, UCLA researchers used a unique brain scan to assess the levels of amyloid plaques and neurofibrillary tangles — the hallmarks of Alzheimer's disease — in adults with Down syndrome.

Published in the June edition of the Archives of Neurology, the finding may offer an additional clinical tool to help diagnose dementia in adults with Down syndrome, a genetic disorder caused by the presence of a complete or partial extra copy of chromosome 21.

Adults with this disorder develop Alzheimer's-like plaque and tangle deposits early, often before the age of 40. Previously, the only way to physically detect these abnormal proteins in this population was through an autopsy.

Over the last decade, methods for identifying and imaging the neuropathology of Alzheimer's disease in living patients have been developed. UCLA researchers have created a chemical marker called FDDNP that binds to both plaque and tangle deposits, which can then be viewed through a positron emission tomography (PET) brain scan, providing a "window into the brain." Using this method, researchers are able to pinpoint where in the brain these abnormal protein deposits are accumulating.

Due to individual variability and difficulty in obtaining baseline levels of cognitive function in adults with Down syndrome, such imaging may be useful in helping to diagnose dementia, say researchers.

"Neuroimaging may be a helpful tool in assessing and tracking plaque and tangle development over time in this population," said the study's senior author, Dr. Gary Small, a professor at the Semel Institute for Neuroscience and Human Behavior at UCLA who holds UCLA's Parlow-Solomon Chair on Aging. "Early detection can also lead to earlier interventions and treatments, often before symptoms begin." 

 This is great news. Next question what can we use and when can we use it? 

For this study, researchers administered the FDDNP chemical marker intravenously and then performed PET brain scans on 19 non-demented adults with Down syndrome (average age 37), 10 healthy controls (average age 43) and 10 patients with Alzheimer's disease (average age 66).

I don't know about you but average age of 37 is not very old.

Analysis found significantly higher binding levels of the chemical marker in participants with Down syndrome in all brain regions, when compared with healthy controls. Compared with Alzheimer's disease patients, subjects with Down syndrome showed significantly higher binding levels in the parietal and frontal regions — areas involved in memory, behavior and reasoning.

"The higher level of plaques and tangles may be reflecting the early and extensive accumulation of these deposits seen in individuals with Down syndrome," Small said.

The researchers also discovered significant associations between increased age in those with Down syndrome and higher FDDNP binding values in the parietal, lateral temporal and frontal regions.

"This is one of the first times we've been able to visualize the neuropathology occurring in the living brains of adults with Down syndrome," said study author Dr. Jorge R. Barrio, a professor of molecular and medical pharmacology at the David Geffen School of Medicine at UCLA who holds UCLA's Plott Chair in Gerontology. "The age-related patterns and regional distribution of the plaques and tangles were consistent with the types of deposits that could only be identified previously through an autopsy."

While the FDDNP brain scans didn't differentiate between the two types of abnormal proteins, the areas of accumulation were consistent with earlier autopsy study findings, which had shown that while plaque and tangle pathologies are the same in both Down syndrome and Alzheimer's disease, the deposit patterns are different.

Autopsy studies have also shown that all adults with Down syndrome eventually develop these accumulations of amyloid plaques and tau tangles. But rather than experiencing memory decline and other cognitive losses, as is common with Alzheimer's, aging Down syndrome patients tend to develop behavioral problems.

[37 years old is not eventually]

I can't even comment on the ludicrous description that   DS don't experience memory decline. You can't lose what you don't have. 

As part of the study, researchers performed cognitive and behavioral assessments of the Down syndrome subjects to see if FDDNP binding levels correlated with assessment results. They found several positive correlations with behavior abnormalities associated with these brain changes, including indifference and inappropriateness.

Oh great what is inappropriateness????

"We found that the behavioral changes in the subjects with Down syndrome correlated with neurological changes in related areas of the brain consistent with the level of FDDNP binding levels to the abnormal proteins," Small said.

They found the correlation between neurological changes and behavioral changes. This means the behavioral changes are a PHYSICAL Change in the brain. It has nothing to do with motivation or desire. It is not purposeful actions. The patient with Down Syndrome is literally crumbling from the inside out.

Small noted that cognitive skills in people with Down syndrome vary considerably and may not have been captured completely in the assessment, which primarily measured memory function. Larger future studies will compare other cognitive tests with FDDNP binding values, he said.

In addition, researchers plan to determine the relative benefits of different forms of PET imaging using various chemical markers, including FDDNP.

###

This study was supported by the National Institutes of Health and the U.S. Department of Energy.

UCLA owns three U.S. patents on the FDDNP chemical marker. The Office of Intellectual Property at UCLA is actively seeking a commercial partner to bring this promising technology to market.

Small, Barrio and study author S.C. Huang are among the inventors. Disclosures are listed in the full study.

Additional UCLA study authors include Linda D. Nelson, Prabha Siddarth, Vladimir Kepe, S.C. Huang and Kevin E. Scheibel.

For more news, visit the UCLA Newsroom and UCLA News|Week and follow us on Twitter.

So what can we do with this information? Should we take action today or wait until we see the eventual (average age 37) decline?

Neal is really learning math!!!

My 13 year old son, Neal, has a tutor that works with him 2 days per week after school.  This week they were working on some double digit math addition.  She always writes me a note to say how Neal did that day, and here is her note:

"We had a Mexican stand off today in math.  We did about 3 problems together -- then he shut down on me.  So I just sat there.... and he started working by himself and got ALL of them right !"

So....I started wondering if maybe he is just capable now of doing it by himself and he gets frustrated and maybe even insulted that his tutor works each problem with him.  He is changing and learning in leaps and bounds these days, thanks to the protocol!  It is really exciting!  Below is his work:

*Notice how he adds the first two numbers and then writes their sum off to the right, then carries the one over and adds the next column.

Neal's 2nd Piano Recital -- He does great!!

This is a video of Neal, my 13 year old son.  He is playing in his second piano recital.  He is much less nervous this time.  He is playing a song called "Sledding Fun".  Neal has his music and he is reading it.  He knows all the notes and it sounds like he doesn't miss a single one!  I am so proud of him!

Watch Warren read a level 4-5 book !!!

Warren is a first grader who was born with Down syndrome.  He is taking the CMF protocol and has been taking it for almost 2.5 years.  He is doing amazing things!  Watch the video below to see for yourself. 

Check Out Jordan's Spelling Skills !!

This is a 16 year old boy with Down syndrome.  He has been on the CMF protocol for 5 years.  He was one of the first kids to take the protocol.  His mom works with him on spelling words each week and she decided to film their session this week.  Isn't Jordan amazing???  I think he is!