Temporary Hiatus

For the next 2 weeks, I'll be on a kind of temporary hiatus from blogging. I'll still try to post something here and there, but if I don't get anything posted, don't be surprised. My grandmother is arriving from out of state tomorrow and she'll be here 2 weeks, so we'll be busy. This next week is already packed full and it's just started ... with everything from a DSAT/Buddy walk meeting to renting out the roller skating rink for my sister's birthday!

So, with that, I'll leave you with a picture from Oklahoma Country :) ~

BTW, if anyone has any questions or whatever, feel free to pop me an email. I'll definitely be able to answer emails still!

Niemann Pick Type-C & Proventigen

Chris Hempel, the mother of twin girls with Niemann Pick Type-C Disease (NPC), emailed to tell me about Proventigen. I'll give a little background first.

Chris is who we originally found out about Longvida Curcumin from. I'm so thankful we were able to run across their website and find it as it has helped so many in the DS community.

The Hempel's were using Longvida Curcumin for a slightly different reason, for their girls with NPC. NPC is also called Childhood Alzheimer's. It's a horrible, rare disease where children slowly begin to lose the ability to walk, talk, eat and live a normal life. These children die very young too and that's why it's called Childhood Alzheimer's disease. NPC is very rare and therefore there is no cure for it. Addi & Cassi's family do a lot of research and try all kinds of supplements and potential cures, so hopefully something will help these girls and therefore help others with NPC.

NPC is a genetic disease and is caused by accumulation (excess) of Cholesterol in almost every place of the child's body, but the most damaging part is the accumulation in the brain.

There are so many similarities between NPC and Alzheimer's Disease. And because there are so many similarities between AD and Down syndrome, it's very curious to know whether cholesterol plays a role in DS or whether families can find information through DS research for their kids with NPC. Unfortunately, not very much has been researched regarding cholesterol and DS. Although, there is something up with it, as cholesterol is typically high when bloodwork is done in DS. But, then again, Down syndrome is such a multi-faceted, complicated syndrome and there are so many factors that contribute to the syndrome, scientists have a lot of study!

So, back to Proventigen (click here to see it). Proventigen is a new product designed to support brain health. It contains Longvida Curcumin, Pomegranate Extract, N-Acetyl-Cysteine, Vit. B6, Folic Acid & Vit. B12.

It sounds like a very promising, good product. But . . . . . there's one problem that makes me slow to use it or recommend it for DS. It contains N-Acetyl-Cysteine (NAC), which has been seen to cause leaky gut and increased oxidative stress in DS. Neither of which are good things, especially when GI issues and high oxidative stress is already an issue in DS.

If it was all the other ingredients without NAC, I'd want to use it in a heartbeat! The combination of Longvida Curcumin & Pomegranate sound very hopeful. Both of those are excellent for promoting brain health! But, for now, unless other research shows up, we will pass on using Proventigen because of the concern of NAC.

So Sad.

This little girl had Cerebral Palsy in Eastern Europe.

Because of that, she was left in an orphanage . .  .
...To be hidden away from the world and from a family
...To be taken care of just enough to live, but with minimal care, love & nutrition
...To spend her days in a crib

When she outgrew her time at the orphanage, she was transferred to a horrible mental institution in Eastern Europe.

Simply because she had Cerebral Palsy. 

According to the mindset of many people in EE, she wasn't fit to be a part of society. Her life was destined to be hidden away. Tucked away in a crib in a dark orphanage and then quietly transferred to a place where many children die very shortly after coming.

And that's what happened to this little girl.

Just a few months after arriving at this horrible mental institution, she passed away. So sad.

Her days were spent hidden away from the eyes of the world, so that no one would have to deal with this child who may be a "burden to society."

But, there was One who knew all her days from the time she was born and that is God. I praise God that He will come soon and bring true justice to all.

10 percent off of Down Syndrome: What You CAN Do

I received a coupon today from LuLu, the company which publishes our book for 10% off. You can order our book from the link right at the top of this blog, or by clicking here.

So, if anyone wants to order an eBook or print copy of our book, Down Syndrome: What You CAN Do, you can get 10% off by entering the coupon code below. It's good until Septembe 30, 2010. Pass onto anyone you know who may be interested :)!

Coupon Code to enter at checkout: AUTUMN

If you've bought our book, we'd love to hear. So, leave us a comment and let us know how it has helped or what you think of it :)!

Adoption Homecoming Video: This is Home

John & Charissa Urban (you can view their blog here) live just a few hours from us here in Oklahoma. A couple years ago they adopted Ava (who has Down syndrome) from the Ukraine. She was 4 years old and the size of an infant. She has since made tremendous progress.

This summer, the Urbans went back to the Ukraine to adopt Joseph, another little boy with Down syndrome and also Zoya, a little girl with other special needs.

Charissa put together a slideshow of Joseph's & Zoya's adoption. I thought it was very sweet and figured you all would enjoy it too.

Pujols Family Foundation

This came through one of the DS listservs I'm on and I thought I'd share it here. Albert Pujols, a slugger for the St. Louis Cardinals has a daughter with Down syndrome and he has a foundation to help those with Down syndrome.

Pujols accepts award, La Russa accolade at Beck rally

 

 

Cardinals slugger Albert Pujols said he was honored and humbled standing Saturday in front of a mass of people larger than any baseball crowd to receive an award for his success off the field.

After hearing from such notables as former Alaska Gov. Sarah Palin and television personality Glenn Beck, a crowd that stretched from the Lincoln Memorial to the Washington Monument cheered when Pujols was presented with an honor called the Hope Award.

"I want to thank God for giving me this platform as a baseball player," Pujols said to the crowd at the "Restoring Honor" rally, organized by Beck.

Pujols was introduced by Cardinals manager Tony La Russa, who described his first baseman as "a real-life hero."

"Wow, what a view," La Russa said as he surveyed the crowd.

Organizers had a permit for 300,000 people. The National Park Service stopped making official crowd estimates more than a decade ago after being accused of undercounting the Million Man March.

La Russa, wearing an untucked dress shirt, said the Hope Award represented honesty, integrity and trust in life, both personally and professionally. He described Pujols' nearly 10-year career as "historic" in the 120 years of Major League Baseball.

"His baseball exploits are not the reason that he is the Hope Award recipient," La Russa said. "What separates Albert is his total commitment to his life in and out of baseball, his commitment to his family ... his commitment to his faith and his tireless in- and out-of-season commitment to community."

La Russa added: "If you're in the St. Louis area, you will see Albert on days off, evenings off, throughout the very tough six-month season, tirelessly being involved with causes, especially their own Pujols Family Foundation."

After receiving his bronze medal, Pujols thanked his wife, Deidre, who was backstage, and those who contribute to his foundation, which helps people with Down syndrome. The first baseman also made reference to his work in the Dominican Republic.

"We can't forget where we came from," said Pujols, who was clad in black.

"As long as I'm alive, I'm going to continue to do the best I can to represent Jesus Christ," he said in one of several references to his faith.

Beck, a Fox News host, described the event he organized as nonpolitical.

St. Louisans in the crowd said they had journeyed to Washington in hopes of sending a message to fellow Americans about what they regard as perilous times.

"This is to wake up the people. The politicians don't listen," said Gerard Barron, 54, who owns a construction company in Ballwin.

Tom Gates, 64, a retired banker from Chesterfield, said his disgust at the government's deficit spending had prompted him to make the trip.

"You can't spend what you don't have," he said.

John Schneiderhahn, who owns two tropical fish stores in the St. Louis area, said he was downright frightened by what he saw in the local economy.

"I'm scared that where we're going is not a good place. There is no good ending to this story unless we make a U-turn," he said.

Critics gather here

About 30 people gathered Saturday near the Stan Musial statue outside Busch Stadium to decry La Russa's and Pujols' participation in the Washington rally. The protest here was organized by Metropolitan Organizations Strengthening and Empowering Society.

"I'm fed up that politics has to invade every aspect of our lives," said Chris Andoe, a Cardinals fan who carried several signs, including one that said "I had a dream baseball wasn't political," a reference to the Rev. Dr. Martin Luther King Jr.'s speech.

Ken McKoy, the executive director of the society, said it was hypocritical for anyone from the Cardinals organization to attend a rally with themes opposing government intervention when tax dollars helped fund construction of the stadium, an act he called "corporate welfare."

St. Louis Alderman Terry Kennedy and Normandy Mayor Patrick Green also spoke at the rally.

Leah Thorsen of the Post-Dispatch contributed to this report.

(Pujols Family Foundation website can be seen here)

New Research Regarding Alzheimer's & DS

A recent study was published in regards to the Amyloid Beta Protein and it's role in both Alzheimer's disease and Down syndrome. This protein is overexpressed in DS and is also responsible for the plaques and tangles which forms in AD patients.

This is one hope of Longvida Curcumin, to break up the plaques and tangles caused by APP. Curcumin is known to break up those plaques and tangles, but from what it appears it needs to be a very high dose. So, that is still in the works.

But what this study researched was what enzyme causes APP to produce plaques and tangles and a means to control that. While no drug or therapy that is safe has been found yet, this is non-the-less very interesting and noteworthy.

To see the abstract of the study, click here.

New hope for Alzheimer’s patients 

By Dr Cesar Chelala /New York

A finding by a team of Rockefeller University scientists led by Dr Paul Greengard, a Nobel laureate, throws light on an important feature of Alzheimer’s disease. The finding may result in better treatment for both this disease and for patients with Down syndrome. Better treatment for both diseases could improve the lives of millions of people worldwide.

Patients with both Alzheimer’s disease and with Down syndrome have an accumulation of a protein called beta-amyloid in their brains. The accumulation of this substance is believed to initiate the pathological changes (among them the plaque that builds up in the brains of people with Alzheimer’s) leading to brain dysfunction, cell death and dementia. The hallmark lesions (tangles and plaques) of Alzheimer’s disease are also present in all adults with Down syndrome after the age of 40, suggesting a shared genetic susceptibility to both.

Although it wasn’t known if beta-amyloid played a role in mental retardation, particularly in Down syndrome patients, the Rockefeller scientists worked under the hypothesis that it could have an effect. If this were true, they reasoned, lowering levels of beta-amyloid could result in an improvement of symptoms.

Dr Greengard and his collaborators found an enzyme (enzymes are proteins that speed up chemical reactions) that stimulates the production of beta-amyloid. In the new study, led by Gen He, a research associate in Greengard’s lab, the researchers showed that the enzyme stimulates production of beta-amyloid in cell lines, and that reducing it brings down beta-amyloid. That enzyme could thus be an important target for the development of new drugs against Alzheimer’s disease.

To test the hypothesis that increased beta-amyloid could be responsible for the symptoms of mental retardation, Dr Greengard and his colleagues tested a compound which is known to suppress the production of beta-amyloid in a mouse model with Down syndrome. Mice treated with this compound not only had a rapid reduction of beta-amyloid but also showed a significant improvement in their ability to learn to navigate a water maze. They were also able show some other signs of improved mental functioning. The control group used did not show any of these effects.

In another set of experiments, Dr Greengard and his colleagues developed a strain of mice that had a gene for Alzheimer’s. When they blocked the gene for the enzyme that increases the production of beta-amyloid, the animals didn’t develop plaque in their brains.

Reality in science is always more complex than anticipated, though. The compounds used to lower the levels of beta-amyloid have generally some serious toxic side effects. Only one of these compounds, the anti-cancer drug Gleevec, used to treat a rare form of leukaemia, was able to lower beta-amyloid without toxic side effects. The problem with Gleevec, though, is that it doesn’t remain in the brain long enough to treat either Alzheimer’s disease or Down syndrome. The importance of Gleevec, according to Dr Greengard, is that it may provide a model for developing new anti-beta-amyloid drugs.

The discovery of a new target for these drugs is a new and significant development in the treatment of Alzheimer’s disease and Down syndrome, both of which affect millions of people worldwide.  Only in the US, it is estimated that approximately 4mn Americans are affected by Alzheimer’s disease.

In what until recently had been an almost hopeless situation, the discoveries of Dr Paul Greengard and his colleagues shed a new light into what had been until now a rather dismal situation.

Life On The Ranch: The Blue Hole

Yesterday was spent going swimming with friends at a local swimming hole that the locals refer to as "The Blue Hole." It's a nice little swimming spot and perfect for the little kids, with some shallow spots, but also nice for those who know how to swim, with a few deep spots.

Although the water is getting pretty cool and the weather is cooling down, it was still a very nice swim. It'll probably be one of the last swimming times this year.

 

Osiyyah throwing a football to someone in the water

Warming up on the shore eating some yummy French Vanilla Popcorn.

After swimming was done and animal chores were done, we headed over to the neighbor's for dinner and to watch a soccer game.

So, there's a recap of our nice, relaxing Labor Day Sunday :). Hope you all had a good Labor Day weekend!

What to Buy From TalkTools?

Brandie left a comment on this post, asking for any recommendations on DVD's from TalkTools. Although I have posted a couple times in regards to items and videos we use from Talk Tools (see here and here), I thought it would be good to devote a whole post to my recommendations for DVD's from TalkTools.

DVD ~ As A Parent: What Can I Do?
*Although, I have never watched this DVD, I have heard very good things about it. And even though it is not very expensive, it would probably be an easy way to start. But, I still think some of the more complex DVDs are extremely beneficial.

So, onto those DVD's:


DVD ~ Down Syndrome Population
*This is an excellent 6 hour series. I highly recommend it.

DVD ~ Jaw Assessment & Treatment
*This is a great topic and something that needs to be understood for those of us involved with someone with DS. I read the book on this and it made so. much. sense.

DVD ~ Pre-Feeding/Organizing The Mouth Set
"Pre-Feeding: Preparing the Oral Musculature," and "Organizing the Mouth for Feeding and Speech"
*I watched these DVDs a few years ago and they are very helpful!
**Individual DVDs of these videos: Pre-Feeding by Lori Overland & Organizing the Mouth by Lori Overland.

DVD ~ Bubbles As Therapy Tools
*Very informative video. Makes understanding the Bubble therapy much easier.

DVD ~ Horns as Therapy Tools
*Very informative video. Makes understanding the Horn therapy much easier.

DVD ~ Straws as Therapy Tools
*Very informative video. Makes understanding the Straw therapy much easier.

Or, better yet, you could buy a 5 DVD set (which is what we did a few years ago) that includes:
Bubbles/Horns/Straws as Therapy Tools, Pre-Feeding & Organizing the Mouth by Lori Overland. This DVD set also includes kits for the Bubbles/Horns/Straws. You can see that DVD set at this link.

If you're only going to get two DVD sets, I would suggest the 5 DVD set right above and the Down Syndrome Population 6 hour series. That'll give you 11 hours worth of DVDs to watch and you should be understanding things a lot better by the end :).

Hope this helps!

TalkTools Sale!

I received an email the other day for a sale that TalkTools is doing. Having bought their videos throughout the years, I know they can be pretty expensive. Hopefully this discount will be of use to someone!

"Our MOST popular promotion is back!


RECEIVE 40% OFF ALL EDUCATIONAL DVD's!!! --  Prices as low as $39.00!


**Our Self-study DVDs are among the most accessible and convenient means to acquire continuing education units (CEUs), and upon completion ITI will make sure the required documents are filed on time and correctly with either ASHA or AOTA. Additionally, the presence of full-length one to two day workshops in your multimedia library will allow you and your colleagues to review the material whenever, and at whatever pace, you like**


PLEASE NOTE: There is only 1 MONTH left to enjoy this amazing offer. Good through September 30, 2010. "

Visit TalkTools website at www.talktools.net.