Saturday, March 28, 2020

Addi & Cassi Appear On November Cover of “The Scientist”

October 30, 2008 by  
Filed under Addi and Cassi News

 twin-disorders

Our sincere thanks to Alison McCook along with the editors, designers and publisher of The Scientist for this incredibly well written story that takes an in-depth look at Niemann Pick Type C disease and explores the possibility that NPC research could provide insights into the mechanisms and potential therapies for Alzheimer’s disease.  You can read the entire story on The Scientist website (free registration). To download a PDF version of the November 2008 issue of The Scientist article, choose one of the following links:

 

Sphingosine and Calcium Defect Causes Niemann Pick Type C, Cholesterol Downstream Effect Of The Disease

October 28, 2008 by  
Filed under NPC News

In a recent issue of Nature Medicine, Oxford University reports that Niemann Pick Type C disease is a sphingosine storage disease that causes deregulation of lysosomal calcium.  According to Oxford researchers, there is a block in the late endosome to lysosome transport in NPC disease, resulting in the downstream storage of cholesterol and glycosphingolipids (a lipid derived from a ceramide that contains a carbohydrate such as glucose or galactose).

For the lay person, this means that cholesterol is not the ultimate culprit in Niemann Pick Type C disease — there is a cascade of events happening in the cell with sphingosine using up the calcium in the cell which then triggers a cholesterol traffic jam in the cells of NPC patients. Oxford conducted extensive studies and published a paper which shows many complex experiments.One experiment showed that Curcumin is helping to correct the loss of calcium and rejuvenate the calcium in the cell.

Typically, NPC mice die at 13 weeks of age.  Above is a picture of a 9 week old Niemann Pick Type C mouse — the one on the top is not treated with Curcumin, the one on the bottom has been treated with Curcumin.  Curcumin is obviously extending its life.  Curcumin is considerd a "spice or supplement," not classified as a drug. This is amazing research by Oxford and I am grateful for their research as my 4 year old identical twin girls, Addi and Cassi, are on high doses of bioavailable Curcumin (delivered to them 2x a day in applesauce!)

The data from Oxford suggests we must pursue a new clinical intervention strategy for treating Niemann Pick Type C, this horrible neurological disorder that is trying to take the lives of my precious twins. What Oxford has also shown us is that NPC patients potentially have another "treatment option" available to them in addition to Zavesca. For many NPC patients who have no access to drugs of any kind, Curcumin could help their suffering children.  Non-toxic drugs similar to myriocin that reduce sphingosine levels could be a therapeutic targets for NPC patients or drugs that act to reguvinate the calcium in the cell could help as well.

If you have a brain disease and have been told that Curcumin can help you and are interested in obtaining the bioavailable Curcumin UCLA Alzheimer’s reseachers have developed for humans, contact Verdure Sciences.  As I reported in my last blog, Verdure Sciences has a compound of bioavailable Curcumin that crosses the formidable blood brain barrier in humans.

KRNV Channel 4 Shelby Sheehan Reports On Childhood Alzheimer’s and Addi and Cassi’s Fight For Life

October 14, 2008 by  
Filed under Videos

Part-2

The “Real Curcumin” for Treating Alzheimer’s, Parkinson’s and Other Brain Diseases

September 28, 2008 by  
Filed under Products We Like

UCLA-Curcumin-Verdure-Scien

Verdure Sciences — Never heard of this company? Neither had I until I started trying to find a natural botanical compound called Curcumin to help treat Addi and Cassi, our identical twins who suffer from a fatal disease that mimics Alzheimer’s in young children. It’s called Niemann Pick Type C (NP-C) and I learned last October that it’s trying to destroy my twins’ brains and kill them.

There is only one experimental drug for Niemann Pick Type C that costs a whopping $160,000 per year so I began looking at every available alternative to treat our twins and save them from dementia. After learning through a special MRI brain scan that Addi and Cassi have brain inflammation I focused my efforts on anti-inflammatory products that get across the blood brain barrier.

I had heard about a natural “wonder compound” called Curcumin that was working well in NPC mice studies and also in Alzheimer’s mice studies. Curcumin is not a new idea. It’s a component of Turmeric, an Indian spice, and people have been trying it as therapy for a variety of diseases and there are thousands of scientific papers on its amazing properties. But I found out there was a major problem with Curcumin. The BBB.

UCLA Curcumin Dr. Greg Cole

Curcumin was a “lab superstar” and working well in test tubes but when tested in humans the absorption rate was extremely low. I was told by our doctors that the Curcumin currently available on the market, even pharmaceutical grade, would not cross the blood brain barrier (BBB) to help Addi and Cassi with brain inflammation. I decided I would try and create my own “bio-available” version of Curcumin and started reading everything I could get my hands on. I even arranged for a formulation pharmacy to help me make a Curcumin suspension. It was then that I read about Dr. Greg Cole.

Dr. Cole is a leading Alzheimer’s researcher at UCLA and during my research I found out that he is the leading authority on Curcumin and had written dozens of papers on the neuro-protective properties of the substance. I decided to email him to see if he could help me understand the bio-available aspects of Curcumin.

A prayer was answered the day I emailed Dr. Cole.  His team at UCLA has developed a formulation of “Optimized Curcumin” that works more like a drug with “super bio-availability.” See the chart.  UCLA’s Curcumin was not only crossing into the blood stream it was crossing through the blood brain barrier (BBB). The BBB is a membranic structure in the central nervous system (CNS) that restricts the passage of various chemical substances and things like bacteria between the bloodstream and the neural tissue itself, while still allowing the passage of substances like oxygen that is essential to metabolic function.

UCLA put me in touch with Verdure Sciences, an innovative bio-nutritional company, making the super bio-available version of Curcumin.  UCLA and Verdure Sciences have done extensive testing and spent several years creating this special formulation. I immediately put Addi and Cassi on significant doses of Curcumin and noticed improvements in their mood, balance and coordination right away. While this is anecdotal, I cannot attribute these positive effects in my girls to anything other than Verdure Sciences optimized Curcumin formulation. Except for a modest amount of diarrhea when we initially started the girls on it, there are no negative side effects from what I can tell. It’s all natural and not even a drug yet it’s acting like a powerful anti-inflammatory.

Do not be fooled by what other companies claim with their Curcumin products. If they tell you it’s optimized Curcumin, it’s not!  There are lots of Internet scams and companies that make all kids of false claims.    Verdure Sciences is the only company that has the optimized Curcumin with UCLA mice studies to back it up. The product is going to be marketed under the name LongVida or “Long Life” but right now it’s only available if you call them directly.

One of the real neuro-protective compounds for the 21st century has finally arrived and it’s not even made by a pharmaceutical company. Thank you UCLA and Verdure Sciences for persevering to bring theraputic Curcumin to people.  While the drug companies are only interested in “drugs” and financial profits, you have shown us a new pathway with Curcumin that is not all about money — it’s truly about health and trying to save peoples lives. I will be forever grateful and I know others will be too.

Dr. Phil’s “The Doctors” Show To Bring Childhood Alzheimer’s Into National Spotlight

September 15, 2008 by  
Filed under Addi and Cassi News

The Doctor TV Show Addi and Cassi Segment

 

On Monday, September 22nd, 2008, our family will featured on "The Doctor’s," a new Dr. Phil spin-off television show that is in its first season.  Addi and Cassi’s battle against Niemann Pick Type C, also known as the "Childhood Alzheimer’s" disease, will be discussed and we will appear as guests on the show.   Addi and Cassi will also make an appearance towards the end of the segment — you can see the girls getting into all the apples on the set!   Watch us now.

Thank you so much to The Doctor’s and to Dr. Phil for helping create this new show to bring reliable medical and health advice to our nation.   We hope this new show will help generate national awareness of our fight to beat this fatal illness that destroys the brain and kills children in childhood.  Please take a moment to read our story and make a wish for us today!

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