Thursday, June 30, 2011

Vote for a Taekwon-Do Student with DS!

I received an email from someone a few days ago in regards to a young man with Down syndrome who does Tae-Kwon Do, Johann Landkroon.

He is in a competition to win a scholarship to represent Special Needs Taekwon Do at the Opening Ceremony of the 2011 Taekwon Do World Championships. This would be a big opportunity to spread awareness!

To find out more about Johann click here.

To vote for him click here. He's currently in second place, is just a few votes short of first place. The voting ends July 17th!

Feel free to share and cross-post :).


Friday, June 17, 2011

A visitor

Yesterday we had a family come by for a visit from Thailand. They are teachers in Thailand and were here for the summer visiting family. I've emailed this family off and on for the past couple months and we met originally via the Einstein-Syndrome listserv.

This family's little girl with Down syndrome is just 3 months old. She was so adorable and was doing so well! Her tone was great and she was very aware of her surroundings.

The family wanted to come by our place just to talk about Down syndrome, see how O is, because he's quite a few years older than their little one, and ask questions about what they can do for their little girl.

They are blessed to be able to have found out all that they have when their little girl is so young. She's been on Nutrivene since she was about a month/month and a half and they are slowly adding other supplements.

It was very nice to be able to talk with them about all that we've learned over the years. All that we've done with O. How we have done things with him. Everything from nutrition, to blood work, to therapy (speech, occupational, physical, etc). After they left, I thought of so many more things I could've shared with them!

When they left, I sent them with a copy of our book, since they only had the eBook. I'm very thankful that God has given us the ability to research so much and learn so much to be able to be in the position to help new families of kids with Down syndrome.

It's helpful to new families in so many ways. Even in just the simple fact of seeing O and how he is living a pretty normal life and doing well, all by the grace of God. When you're given such a "doom & gloom" prospect after the initial diagnosis of Down syndrome, it's nice to be able to see older babies, toddlers & kids with Down syndrome and how they are doing. It's encouraging, as the family who was over yesterday said.


Tuesday, June 14, 2011

Down Syndrome Brain & Norepinephrine drugs

I recently received an email from a family with questions regarding the supplements they were using and considering using with their young daughter with Down syndrome. A couple of the supplements that were in the email, I didn't know very much about and hadn't heard of before. So, of course I wanted to research it to be able to share what I found with them and to also know what it is used for, in case it is something we would consider for my little brother.

In Down syndrome there are several concerns with problems in the brain and degeneration in certain parts of the brain. One area of the brain which sees degeneration is the locus coeruleus (LC), which is in the brainstem. LC supplies the hippocampus with norepinephrine (NE), also known as noradrenaline, which is a neurotransmitter that nerve cells use to communicate. The hippocampus also is affected in people with Down syndrome. This degeneration and lack of NE to the hippocampus creates memory problems. As is described in this quote from Stanford University's article,

"Salehi and his colleagues looked at what could be causing the problems in the hippocampus. Normally, as contextual or relational memories are formed, hippocampal neurons receive norepinephrine from neurons in another part of the brain, the locus coeruleus. The researchers showed that, like humans with Down syndrome, the mice in their experiments experienced early degeneration of the locus coeruleus.
 When the locus coeruleus broke down in the study’s mice, the animals failed at simple cognitive tests that required them to be aware of changes in the milieu: For instance, the genetically engineered mice, when placed in the strange environment of an unknown cage, did not build nests. That contrasts with normal mice, which typically build nests in such circumstances."
As is briefly mentioned in the quote above, near the end of 2009 Stanford University's researchers studied LC, low amounts of NE and it's role in the hippocampus and how to positively change the neurodegeneration.

In this study done by researcher Salehi, they used a "pro-drug" (i.e. it's pro towards norepinephrine) to increase the amounts of NE in the brain of mice models of DS. Their results were very good, as can be seen by a quote from the full text of the study (which can be viewed here),
"In this study, we linked marked defects in hippocampally mediated contextual learning in a model of DS to LC dysfunction and demonstrated that these deficits can be restored by treatments targeted at correcting deficient NE neurotransmission."
So, in short, the researchers used a "pro-drug" called Droxidopa (L-threo-dihydroxyphenylserine, L-DOPS) to increase NE levels in the brain.

Droxidopa crosses the Blood-Brain-Barrier (BBB) and then is able to be used where it is most needed.  Droxidopa was used in conjunction with Carbidopa (which is a DOPA decarboxylase inhibitor). Carbidopa is necessary to be given with Droxidopa so that Droxidopa will ONLY work across the BBB and not outside of the brain. This is necessary to get the optimum amounts of NE in the brain, where it is needed and not outside of the brain where Droxidopa will be dopamine and possibly cause adverse effects.

To see an explanation from the full text of the study that explains the above in more technical terms, here is a quote:
    "We used an NE prodrug that readily crosses the blood-brain barrier (BBB). L-Threo3,4-dihydroxyphenylserine (L-DOPS) or droxidopa is a synthetic amino acid (34). L-DOPS is metabolized by L-aromatic amino acid decarboxylase within NE-containing neurons to yield NE."
By using Droxidopa (along with Carbidopa), the researchers were successfully able to substantially increase hippocampal NE concentrations in mice models of Down syndrome and therefore have greatly improved memory functions & capabilities.

The researchers are now hoping to be able to start clinical trials of Droxidopa on people with Down syndrome, so that it can be approved for use in people with DS. The hope of the Stanford researchers is that by giving Droxidopa and increasing NE concentrations, neurodegeneration may be able to be stopped, or slowed and therefore increase memory function & capabilities.

Their hope is also that it will be helpful to be used in people with Ds who are older and already have large amounts of degeneration and be able to target the still functioning parts of the neurons. Here is a quote from the full text of the study which Stanford researchers did (Restoration of norepinephrine-modulated contextual memory in a mouse model of Down syndrome.) that discusses the above,
"The most important implication of our work is that postsynaptic targets of degenerating neurons
may remain responsive and functional well after the presence of advanced disease in their presynaptic inputs. If so, treatments that target still-functional elements of neuronal circuits may restore circuit function. In particular, treatments targeted to restore the loss of NE inputs to the hippocampus may prove effective in enhancing cognition in people in whom these neurons are affected."
And, here is another interesting quote from the full text of this study. This quote below shows just how well their results were in the DS mouse models.
"Indeed, NE release from LC axons may play a defining role in cholinergic and serotoninergic
neurotransmission. Given the degeneration of these other neuronal systems in the Ts65Dn mouse as well as in DS and AD, it might be argued that dysfunction of the LC represents only one of several deficiencies and that rescuing NE concentrations would have no effect on cognition. Our data argue that this is not the case. Instead, they indicate that restoring NE neurotransmission is effective even when these other neurons are affected."
Another quote from the study, which summarizes what has been said above:
"In this study, two agents acted to restore contextual learning. In the case of L-DOPS, the drug is metabolized by LC terminals to produce NE......If this circumstance also applies to humans, restoring NE concentrations in the hippocampus may act to enhance contextual learning even in patients in which LC degeneration is advanced."
And one final quote from the study,
"Our findings suggest that enhancing NE neurotransmission may be useful in treating cognitive disability in DS. An important question is which age group to target. The murine studies reported herein suggest that young adults with DS, in whom pathology is present but not advanced, may be appropriate. If the status of LC neurons and their targets in mice mirrors those in humans, at this stage of the disorder postsynaptic adrenergic receptors will be present and responsive to
pharmacologically induced increases in brain NE concentrations. We envision a plan to test the efficacy of droxidopa in young adults with DS."
Now, the question is, do we supplement our children with L-DOPS, because of the positive outcomes of the study? It's a tough question.

I am one of those people who will look at a study and act upon the results. We've done it numerous times. That's why we give O Longvida Curcumin, Nutrivene-D, Ginkgo Biloba, etc. Because we've seen what the study says and we put the puzzle together - by doing this & giving this, an improvement was seen here, so let's do that!

From the research I have done so far, I see no harm in giving L-DOPS to increase NE levels. I see a lot of benefit.

Personally, I have a hesitancy with it still, because it is a drug and is a synthetic amino acid precursor. If you've been reading this blog for any length of time, you'll know that we have a hesitancy with taking drugs (hence the reason why O does not take Prozac, as is recommended by the Changing Minds Foundation). So, that is the only reason why and where my hesitation comes from.

I will continue to research L-DOPS/Droxidopa and ways to increase NE levels and share what I find, if I find anything else of interest. There are a few things I have taken down in a note to look at further as well, just in finding out other ways that NE deficiency is connected in Down syndrome.

There are some other thoughts and things I want to research in regards to possible ways to increase NE by using L-tyrosine, and using a natural DOPA decarboxylase inhibitor like EGCG, but that will have to wait for another day.


Down But Not Out

Last year, New Zealand introduced a new blood test as part of an improved screening programme for Down Syndrome. But a group of parents provocatively calls it eugenics; the practice of selective breeding of the human race. Because worldwide data shows the better the testing programme, the more Down Syndrome pregnancies are terminated.

60 Minutes reporter Paula Penfold meets those who live with Down Syndrome to see what kind of lives they do lead, and asks the question at the heart of the issue: should they, or shouldn't they have been born?

You can watch the video at this link.

As I've said before, I would agree that improved screening will more than likely equal a higher rate of abortion for prenatally diagnosed babies with Down syndrome. Statistics already show that. over 90% of babies with Down syndrome prenatally diagnosed are aborted. And it's really disheartening.

It would be great if the testing was accepted and provided as a way to provide the best possible care for the unborn baby. But, our society is so turned on it's head, that's it's used for the opposite, to destroy the baby.


Friday, June 10, 2011

Nuts & Seeds to help Alzheimer's

This came through a Down syndrome list I'm on and I thought it would be helpful to share.

By Fiona Macrae
Last updated at 9:37 PM on 5th July 2010

Snacking on nuts could help keep the mind sharp into old age, research suggests.

A study has credited vitamin E - found in nuts, seeds and olive oil - with warding off Alzheimer's.

Pensioners with the highest amounts of the 'anti-ageing' vitamin in their blood were around half as likely to develop the devastating disease as those with the least vitamin E in their bodies.
Nuts are a rich source of Vitamin E which may ward off dementia. However, the Food Standards Agency warns that high doses of the vitamin can be harmful

Nuts are a rich source of Vitamin E which may ward off dementia. However, the Food Standards Agency warns that high doses of the vitamin can be harmful

The finding suggests that nuts and oils could provide a cheap and tasty way of keeping the mind healthy as the years advance.

Alzheimer's affects some 400,000 Britons and around 500 new cases are diagnosed every day.

The Swedish researchers measured vitamin E in samples of blood taken from 232 men and women. All were aged 80 or older at the start of the study and free of dementia.

After six years, 57 had developed Alzheimer's, the Journal of Alzheimer's Disease reports.

However, the disease was around half as common in those boasting the most vitamin E at the start of the study.

Previous research into the subject has produced conflicting results but the researchers believe this could be because it mainly focused on one sub-type of vitamin E, rather than looking at it as a whole.

Lead researcher Dr Francesca Mangialasche, of Stockholm's Karolinska Institute, said: 'Vitamin E is a family of eight natural components, but most studies related to Alzheimer's disease investigate only one of these components.

'We hypothesised that all the vitamin E family members could be important in protecting against Alzheimer's disease.

'If confirmed, this result has implications for both individuals and society, as 70 percent of all dementia cases in the general population occur in people over 75 years of age, and the study suggests a protective effect of vitamin E against AD in individuals aged 80-plus.'

She added that with previous research linking one particular form of vitamin E found in supplements with premature death, people would be better off getting a mix of the different forms of the compound from their diet.

A vegetable, fruit, nut and olive oil-rich Mediterranean diet could be particularly beneficial.

'Our findings need to be confirmed by other studies but they open up the possibility that the balanced presence of different vitamin E forms can have an important neuroprotective effect.'

The Food Standards Agency warns that high doses of the vitamin can be harmful and says that people should be able to get all the need from a balanced diet.


Wednesday, June 8, 2011

Neuronascent, Inc

I hadn't heard of this until it came across one of the Down syndrome lists I'm on. It'll be curious to see what this neurogenesis program involves.

CLARKSVILLE, MD--(Marketwire - Jun 2, 2011) - Neuronascent, Inc. announced today that the Company has received funding from both the federal government, under the Qualifying Therapeutic Discovery Project for the development of its preclinical therapeutic candidates for neurodegenerative diseases, and from Maryland's Biotechnology Center, to accelerate development of its neurogenic candidate for Down syndrome. The latter project is a collaboration with Dr. Barbara Slusher, Chief Scientific Officer, Johns Hopkins University's NeuroTranslational Brain Center.

Neuronascent aims to develop non-invasive therapeutics for central nervous system indications with high unmet need. The company's lead compounds, currently in preclinical testing, are developed to regenerate neurons and provide specialized neuroprotection for newly generated and surviving neurons under neurodegenerative diseases. These potentially disease-modifying effects aim to improve behavioral outcomes including motor function and memory. Animal studies with these compounds have previously shown a reversal of cognitive loss in aged mice to young levels.

"These funds will allow us to provide proof-of-principle that our neurogenic therapeutic may be effective for Down syndrome, a new target for drug development," said Judith Kelleher-Andersson, Ph.D., President and Chief Scientific Officer. "These funds also afford us the opportunity to pursue multiple preclinical studies to further develop our lead agents for clinical trials in Alzheimer's and Parkinson's disease."

Founded in 2004 by Dr. Kelleher-Andersson, Neuronascent, Inc. is a small-molecule central nervous system drug discovery company, developing novel therapeutics using their neurogenesis discovery platform. Neuronascent has laboratories in Rockville and Frederick, Maryland.

For more information contact:


Monday, June 6, 2011

Corn Intolerance

While the common allergies most talked about are gluten, dairy, peanuts, soy, eggs, etc, another allergy is very common, yet rarely mentioned. That allergy is to corn. And as some may know, especially here in the US, corn is in almost everything, so it seems.

Unfortunately, a lot of this is due to the fact that corn has been patented by a large company (M*nsanto) and genetically modified.

But, regardless of that fact, it's an allergy that a lot of people have to deal with and don't have an easy time. Why? Because the FDA does not recognize corn as one of the "8 common allergies" and therefore is not required by law to state there is corn in a food product. Corn comes in so many shapes and sizes and by names that typically is not realized, until further research.

Now, while this isn't necessarily related to Down syndrome, we do deal with a Corn Allergy in my family. One of my brother's cannot have corn, which makes buying products at the store challenging.

So, I thought I would share this informative, brief article on corn allergies.

A world built kernel by kernel 

by Bethany Hubbard

May 26, 2011

What do shampoo, conditioner, relish, toothpaste, Skittles, paint and blue jeans all have in common?

A corn derivative can be found in all of these items, something I recently discovered when I developed an intolerance to this versatile yellow vegetable.

My epiphany came in October. After giving up gluten, with the hope that it would help my asthma, I began to eat corn products instead. Corn tortillas, corn cereal, corn chips, cornbread – corn was a part of my daily diet.

Several months later, after a few weeks of severe stomach cramps and nausea, I began to connect the dots. Every meal with corn brought hours of inexplicable pain.

I was finally convinced of my failing relationship with corn when I accidentally ate stir-fry made with tofu that had been flash-fried in corn oil. I went through all the ingredients, and couldn’t pinpoint a culprit, until I took another look at the tofu wrapper.

This sparked a quest to learn more about my yellow nemesis. Through endless Google searches, I discovered that it was not just my food I had to worry about. Could corn be the cause for my itchy skin? I’d changed lotions several times, but could not find a product that did not cause irritation.

I began to look at the labels on my beauty products, and suddenly all I could see was corn: zea mays, sorbitol, xanthan gum, dextrose, lysine, citric acid.

Even some of my medications, such as Claritin, taken as preventative treatment for my allergies, contain corn derivatives.

The corn industry applauds the prevalence of its products. The Corn Refiners Association wants people to know how big a role corn plays in diverse products and promotes the fact on its home page.

“Corn in our daily lives: From the toothpaste you use in the morning to the book you read at bedtime, corn plays a part in nearly every aspect of our lives,” the website states.

Still, many people are oblivious to such information. Ask a person if they eat corn, and they might mention summer grilling season, movie popcorn, or grandma’s corn muffins. But vitamins, yogurt and Tylenol most likely won’t make the list, yet all three may contain corn derivatives.

Others might think of corn syrup, thanks to the recent ads rebranding the vegetable-derived sweetener.

The goal of the campaign is to relabel high fructose corn syrup as “corn sugar.”

“Health and nutrition experts—including doctors, dietitians, researchers and professional organizations — are in agreement that whether it’s corn sugar or cane sugar, your body can’t tell the difference. Sugar is sugar,” it states on

Corn is not only prevalent, it is the cornerstone of a powerful industry involved in all factions of manufacturing.

One bushel, or 56 pounds, of corn can create 31.5 pounds of starch, 33 pounds of sweetener or 22.4 pounds of PLA fiber/polymer, according to the “2011 World of Corn” report by the National Corn Growers Association.

The U.S. select crop value of corn in 2010 was $65.79 billion, according to the association. While frustrated corn-allergy sufferers have created several blogs and support sites, there is not a lot of official information available. Consumers have banded together online to post lists of products that are corn-free and lists of ingredients that are derived from corn. One list has more than 180 ingredients on it.

Only eight allergens, known as the “big eight,” are recognized in the U.S. as being extremely prevalent: tree nuts, peanuts, fish, shellfish, soy, wheat, dairy and eggs.

“The eight main allergens are the most common, and that’s why those are the allergens that are covered by labeling laws,” said Barbara Rosenstein, director of communications for the Food Allergy Initiative in New York City. “But, of course, people can be allergic to any food. There’s a very wide range of food allergies. And, we’ve certainly gotten calls from people who are allergic to corn.”

Dr. Jacquelynne P. Corey, of the University of Chicago Medical Center, said that corn allergies are actually quite common.

“There are several things that are actually fairly common, and corn, being a very common part of the American diet, is very present in many foods that you wouldn’t necessarily even think about.”

Because there is no current cure for food allergies, Rosenstein said that allergy sufferers must be cautious consumers to avoid anaphylaxis, which most people associate with a swelling and closing of the throat.

“As with any food allergy there has to be very careful reading of labels, speaking to restaurant personnel, chefs at a restaurant and so on – taking very careful precautions to avoid problem ingredients,” she said.

Dr. Corey said that anaphylaxis manifests in other ways as well.

“It’s not as common, but many people with food allergies also have reactions in their nose or eyes, such as sneezing or itchy eyes, or chest tightness, such as an asthma attack,” she said.

I do not know if I am technically allergic to corn. I have an appointment with an allergist next week to find a definitive answer. I do know that I cannot eat corn without consequence. I do know that when I use products without corn, I feel better.

I also know that eliminating corn from my life will not be easy.


Sunday, June 5, 2011

Documentary On Student with DS In Oregon

MEDFORD, Ore. — When Chapman University filmmaking student Ruby Stocking graduated from Ashland High School in 2008, she had never met Eliza Schaaf, a classmate with Down syndrome.

Three years later, Schaaf's battle to attend a ceramics course at Ashland's Southern Oregon University became the topic of a documentary by Stocking and three other students at Chapman in Orange, Calif.
"Originally, going into the project we were hoping to make a film about SOU and its impact on Eliza having been withdrawn from the ceramics course," Stocking said. "We just realized there was a greater story within the SOU clash with Eliza, that story being inclusion and whether or not someone who is disabled should be included in society or whether they should be separated."

The documentary, which will be screened at 6 p.m. Wednesday, June 1 at Ashland High School's Mountain Avenue Theater, has been nominated for the university's Dodge College of Film and Media Arts Cecil Award for Best Documentary. It also will be entered into at least five film festivals.

Last fall, Schaaf enrolled in a college-level ceramics class as a non-admitted student at SOU. Non-admitted students may enroll in up to eight credits of classes but don't earn credit toward a degree. Midway through, the SOU administration decided to drop Schaaf from the class.

The university said Schaaf required excessive supervision and one-on-one attention that limited the instructor's ability to interact with the rest of the class. Schaaf's classmates signed a petition stating that Schaaf did not interfere with their ability to learn and asking that she be reinstated.

Schaaf's family has appealed the decision to the Oregon University System, which so far has upheld it.
Stocking heard about the story from a friend on Facebook around the time when she and classmates Bobby Moser, James Parker and Virginia Thomasi were looking for a topic on which to make a documentary for their Chapman class called Community Voices.

The documentary project was expected to highlight a social justice issue for an Orange County organization. The Dhont Family Foundation funds the student-made documentaries each year.

When the group contacted the Down Syndrome Association of Orange County, it learned the association already knew Schaaf's story, as it had gone viral among the Down syndrome community.

For eight days in February and March, the four students filmed Schaaf working out at the Ashland Family YMCA, volunteering at the Ashland Emergency Food Bank and doing other daily activities. They also collected home videos of Schaaf and interviewed her, her family and classmates.

"I thought the documentary would be a collection of activities and all the things Eliza can do and that it would downplay the SOU issue," said Deb Evans, Schaaf's mother. "They wove the story about her experience at SOU into a look at her life through her family and through who she is.

"They presented Eliza's story in a way that opens a dialogue," Evans said. "I think they've done that brilliantly."
From kindergarten until Nov. 8 when SOU dropped her from the ceramics class, Schaaf had been included in general education classes with her typically developed peers, Evans said. She earned a modified diploma from AHS last June and wanted to join her classmates in the next step, college, where she wanted to study art and photography.

Stocking said she and her classmates traveled to Oregon three times for the filming. The time they spent together sealed a close friendship between Schaaf and Stocking, the filmmaker said.

Stocking said she thinks SOU's decision to withdraw Schaaf was wrong, but she acknowledges some people might disagree.

"I never thought about inclusion within the disabled population," Stocking said. "It caused me to examine myself and to examine others."

The crew did not include SOU's perspective in the documentary, because they were denied an interview.
Jim Beaver, a SOU spokesman, said he had not seen the documentary and could not comment on it.
"We were approached by some people who wanted to make a documentary," Beaver said. "They asked to speak to the president and gave us some tentative dates, but she was not available. Even if she had been available, she couldn't have said anything" because of federal law that prohibits disclosing information about students without their permission, he said.


The website is


Friday, June 3, 2011

Sign Language

Sign Language is commonly used in the world of Down syndrome.

It can be extremely beneficial for most children. There are some children who have various issues with it.

For us, it was very helpful when O was a baby and toddler, but it has since hindered him. While he doesn't use many signs anymore, the signs he does know, he won't say the word. It's kind of like a crutch for him.

Like "more" for example. He can say the word, but because he uses the sign, his brain is programmed to use the sign, instead of say it. I believe he'll eventually drop the sign, but it takes time. He used to only shake his head for "No", but can now say the word. As with everything, it's a process and takes time. But, I believe he'll get there one day, by God's grace.

There are some people who are adamant about not teaching babies sign language because of the above possible problem. And some who are huge advocates for teaching sign language.

I tend to be in the middle. I believe it's very beneficial for babies and children who cannot communicate, which is why it is good to teach it when the child is young. Once the child learns to speak, most of the time the signs will slowly start to drop off, because the child does not need them anymore. It's always best to teach the sign language in case the child can't pick up talking well or doesn't ever learn how to talk.

I know one mother who's daughter is now in her early 20's. She doesn't speak. The daughter was born during the time when sign language was greatly discouraged and therefore that's what was recommended back then - not to teach sign language. But, now, the mother wishes she would have taught her daughter sign language, because her daughter has very limited communicating skills.

I was recently sent a link about a website called I went to the website and looked through it and it looks very helpful. Everything is free and they have great resources.

Their site includes....

-a dictionary

-flash cards
-wall charts

....and more!

 Here's an example of one of their pictures which explains how to do a sign ("baby" is being signed in this picture).


Wednesday, June 1, 2011

99 Balloons

I've watched this video a couple times over the years and it always makes me cry. It's a sad video, yet also moving to watch how the parents cherish their little boy who was born with Trisomy 18. The video is titled "99 Balloons", because the baby lived 99 days.


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