Stem Cells For Dummies: The Controvery, Pros and Cons, Facts, Future Research

Ok, I admit it. I am a Dummie!  Especially when it comes to Science!  I do hold a Bachelor of Arts in Political Science from Berkeley but it’s not exactly the type of “Science” degree you need when your children are dying from a rare cholesterol disease that causes dementia.

All of a sudden topics like gene therapy and stem cells are very important topics in our household as research into these areas could lead to life-saving treatments for our twins.   But learning complex scientific topics like stem cells can be intimidating to many people.

Dr. Larry Goldstein, professor of cellular and molecular medicine and director of University of California San Diego’s stem cell program, has written a book in plain English on stem cells called Stem Cells for Dummies. The book is intended for anyone who wishes to learn more about stem cells, where they come from and the potential use of stem cells in medical research and in treating disease.

What is the difference between Embryonic stem cells (ESCs), Adult stem cells (ASCs) or iPS cells (Induced Pluripotent Stem Cells)?  What are the many objections to stems cell use in research and why is it such a highly controversial topic?  The book is written for the layperson, doctors or even someone in the medical research field who is not familiar with stem cells.

Stem cell derived neurons will someday allow scientists like Dr. Goldstein determine whether breakdowns in the transport of proteins and  lipids within cells trigger the neuronal death and neurodegeneration that is a hallmark in Alzheimer’s and Niemann-Pick Type C disease.

Stem Cells for Dummies is a fantastic book that allows anyone to brush up on basic biology and learn about critical stem cell research at the same time. You can read the index of topics here. Learning about stem cells today could be life-saving for you or someone you love in the future as the world moves closer to regenerative medicine.

Nothing Bundt Cakes for Nothing Bundt Beautiful Birthday Girls

Addi and Cassi turned six years old on Saturday. Over two years ago when the twins were diagnosed with Niemann Pick Type C disease, I was not sure they would still be with us today. Our little angels are amazing fighters and doing very well on their cyclodextrin infusions.

Here is the ice cream cone cake Grammy Helen and Mommy put together to celebrate their birthday milestone.  We purchased the bundt cakes at Nothing Bundt Cakes and used ice cream waffle cones from Williams-Sonoma and a fun plate and streamers to top it off.

Addi and Cassi normally don’t ingest much cholesterol but this cake was surely loaded with eggs, milk, butter, etc.  A big birthday treat!

Extraordinary Measures Movie Is A National Healthcare Wake Up Call

Extraordinary Measures, a new movie centered on the efforts of John and Aileen Crowley to find a researcher who might help find a cure for their two children’s rare genetic disease (Pompe Disease), will hit theaters on January 22. I can’t wait to see this movie!  The trailer sounds eerily familiar as we are working around the clock to find our own miracle for Addi and Cassi and kids suffering from Niemann Pick Type C disease (a rare and fatal cholesterol disease that is often referred to as the “Childhood Alzheimer’s.”)

I hope this movie is a wake up call to the NIH, FDA, Congress and other government agencies — people must understand what is happening to families facing fatal Rare Diseases. Like the Crowley’s, we are not going to sit around and wait for our kids to die.  But everyday it is a battle with hurdle after hurdle to cross to make the slightest progress.

Thanks to The Crowley’s for being an inspiration to all families fighting Rare Diseases and for CBS Films for making what looks like an amazing movie.  The website they created for the film has an “inspiration quilt” which allows you to upload your personal story.  I uploaded the Addi and Cassi story about our efforts to create a “Virtual BioTech” — please vote for us as we could use the money for cyclodextrin research!   (Vote now and help The Addi and Cassi Virtual Biotech win $10,000).

Please support the goals of CureTheProcess.org, an effort being organized by the Kakkis Everyday Life Foundation.  Our healthcare system needs a miracle too.

Also, join the Global Genes Project and download your denim jeans ribbon — the new symbol for Rare Diseases!

Join Global Genes Project and Get Your Denim Ribbon To Support World Rare Disease Day 2010

World Rare Disease Day 2010 will be held on February 28.  Please join the Global Genes Project to help raise awareness for Rare Diseases of all types by wearing denim on Feb. 28 or holding an event in your local area to raise money for your favorite Rare Disease charity (my party will be to raise money for Niemann Pick Type C!)

According to the National Institutes of Health (NIH), 1 in 10 Americans suffers from a Rare Disease — that’s 30 Million people in the US alone! Collectively, Rare Disease is not so Rare!  Join our campaign to help raise awareness by downloading your jean ribbon today and spreading the word!

Here are some facts on Rare Disease that you may not know:

• A Rare Disease is life-threatening or chronically debilitating disease which is of such low prevalence that special combined efforts are needed to address them (ie. such as Niemann Pick Type C disease which afflicts our twins Addi and Cassi)
• 50% of the identified Rare Diseases have no foundations, support groups or community support for the families
• Approximately 7000 different Rare Diseases exist, with countless awaiting researchers to identify
• Today, Rare Diseases are not being invested in by pharmaceutical companies because of small patient populations and lack of financial incentives to Pharmaceutical and Biotech companies
• Pharmaceutical companies have only developed treatments for 200 of the 7000 rare diseases causing a healthcare crisis
• Approximately 75% of Rare Diseases affect children (22.5 million in the US)

Let’s never give up Hope! It’s In our Genes!

Beware of Air Oxidized NAC Supplements – Pharmaceutical Grade N-Acetyl-Cycsteine (NAC) Boosts Glutathione Levels

Many papers have been published showing that people with diseases of all kinds might have problems with glutathione production in the body. In Addi and Cassi’s case, their fatal cellular cholesterol disease called Niemann Pick Type C is somehow disrupting their glutathione levels in their bodies. Over the past 9 months, we have been trying to correct this problem in the twins through administering a range of supplements.

But how do you go about picking the right supplement to increase glutathione levels in the body?  When you do Google search, hundreds of products pop up all claiming to produce instant results. Through my research, I have learned that raising glutathione levels in the body is not so easy. Simply taking Glutathione itself will not work.

Glutathione (reduced state is called GSH) is an important intracellular free radical scavenger protecting cells against oxidative stress. It is considered one of the body’s primary antioxidants and is produced naturally from three amino acids: Glycine, Glutamine, and Cysteine. Glycine, Glutamine, and Cysteine are considered precursors of glutathione.  Precursors are compounds that participate in the chemical reaction that produces another compound.

N-AcetylCysteine, otherwise know as NAC, is the leading precursor to increasing glutathione levels in the body and can help replenish intracellular GSH levels. Once NAC enters the body, it is metabolized into glutathione. Glutathione can then function as the powerful antioxidant that it is.

All NAC supplements are NOT the same. The problem I have run into with most over the counter NAC supplements is their packaging. NAC is a strong thiol-bearing compound prone to air oxidization. Once you open the bottle you bought on the Internet, the product has likely degraded since the time it was on the manufacturing line.  Bioavailabilty (the amount that actually gets into your body) is likely low.

There is a company called BioAdvantex in Canada that makes a pharmaceutical grade NAC supplement that comes in an effervescent tablet form (see photo).  Think of an Alka Seltzer with a wild berry flavor. Each PharmaNAC fizzy tablet is individually wrapped in a special paper/plastic/foil material to keep moisture and air from entering the package.  The manufacturing process is very well controlled to produce the most bioavialable form of NAC on the market today.  Each tablet comes in 900mgs which I like.

PharmaNAC is more expensive than other forms of NAC on the market.  You can purchase it online at a cost of about $1 dollar a tablet.  This is well worth the price because I don’t want to be putting supplements into my twins that have little chance of helping them.

I also found this useful list of sources that may boost glutathione levels in the body naturally.  Interestingly, one is called Curcumin, another compound I give to Addi and Cassi.  Curcumin has some of the same issues as NAC in that all supplments on the market are not the same.   I use the Curcumin developed by Dr. Greg Cole and Dr. Sally Frauchy at UCLA and made by Verdure Sciences — this is the most bioavailable form of Curcumin that I am aware of.

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