CARDS Proudly Partners with NORD for Rare Disease Day USA February 29, 2012

Alone we are Rare. Together we are Strong.
Join NORD in creating awareness for Rare Disease Day. Learn all the ways you can support the 30 million Americans affected by rare diseases.

Central Arizona Rare Disease Support is proud to partner with NORD and the Rare Disease Day Team to bring awareness to Rare Disease Day on February 29, 2012. “This is a global observance,” said Peter L. Saltonstall, president and CEO of NORD. “Individuals and organizations around the world will all be sharing stories of how rare diseases affect their lives.”

The challenges of living with a rare disease, he said, include:

· Difficulty getting a timely, accurate diagnosis

· Too little research

· Too few treatments

· Reimbursement or other issues affecting access to treatments

· A sense of isolation

· Difficulty finding medical experts

In the U.S., any disease affecting fewer than 200,000 Americans is considered rare. According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans. Studies have shown that it often takes five years or longer to get an accurate diagnosis of a rare disease. In addition, only about 200 of the diseases classified as rare have approved treatments.

Rare Disease Day started in Europe in 2008. It was launched by EURORDIS (Rare Diseases Europe). Last year, it was observed in more than 60 countries, with a national sponsor in each country. NORD is the sponsor in the U.S.

More than 500 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day Partners on the national website hosted by NORD (www.rarediseaseday.us). CARDS is proud to be one of those partners, and hopes to actively help build awareness and support both in Arizona and elsewhere for those with rare and undiagnosed conditions. For more information on NORD, EURORDIS, and events and information on Rare Disease Day USA, please go to http://rarediseaseday.us/.

Each year, a global planning team selects a theme for Rare Disease Day. The theme for 2012 is “Rare but strong together.”

Rare Disease Day activities in the U.S. will include a “Handprints Across America” campaign to create a gallery of photos on the Rare Disease Day website; educational materials for classroom teachers; and a nationwide blitz of patient photos, stories and videos to increase awareness of specific rare diseases and the challenges of living with a rare disease.

Several special events are planned, including a scientific symposium at the National Institutes of Health (NIH) and a Rare Disease Patient Advocacy Day at the Food and Drug Administration (FDA).

“Since many of these diseases are genetic, more than half of the people who have rare diseases are children” Saltonstall said. “The problems encountered by families are enormous. It’s important for these families to know they are not alone.”

NORD was established in 1983. It provides advocacy, education, research and patient services on behalf of rare disease patients, families, and patient organizations

Beware of Food Flavor Enhancers from Epidemic Awareness and Mercola

This is a truly terrifying article from Mercola concerning the use of Human Embryonic Kidney cells used to create food flavor enhancements and additives from a company called Senomyx.  A list of companies that use Senomyx's products is given in the article, as well as additional information about the process they use to extract cells for this purpose.

What You Don't Know About Flavor Enhancers Can Harm You

Posted By Dr. Mercola | September 01 2011 | 20,554 views

Senomyx is a high tech research and development business that is "dedicated to finding new flavors to reduce sugars and reduce salt." But their focus is not on whole, organic fruits and vegetables, or grass-pastured meats, dairy and eggs. Senomyx develops patented flavor enhancers by using "proprietary taste receptor-based assay systems."

That's a testing system that provides scientists with biochemical responses and electronic readouts when a flavor ingredient interacts with their patented receptor, letting researchers know whether or not their flavor enhancer is effective. The receptors are made from HEK293 -- HEK stands for Human Embryonic Kidney cells, with 293 denoting that the HEK was from the 293rd experiment. HEK293 originally came from a healthy, electively aborted baby whose cells were then harvested and cloned.

According to the Weston A. Price Foundation:

"Senomyx's salt taste, savory flavor, and sweet flavors -- as well as all their other flavor enhancers -- are purposefully developed so that they stimulate your taste buds without them actually tasting anything ... Much like MSG, these flavor enhancers operate on the neurological level to produce these reactions ...

Since they are not actually ingredients but rather 'enhancers' they are not required to be listed in a package's ingredients except as 'artificial flavors' ... [And] because very small amounts of the additives are used ... Senomyx's chemicals have not undergone the FDA's usual safety approval process for food additives."



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It's no secret that most processed foods contain a variety of "artificial" and "natural" flavors intended to make you crave a certain brand of chips or cookies over another. But what is largely unknown to most consumers is that a new variety of food additive is already on the market and probably in some of your favorite snack foods.
See Dr. Natasha Campbell-
McBride and Me Speak
in November

We are both scheduled to speak at the Weston Price Foundation Conference Nov 11-13th.

Please click here for more details.

These new additives are unique because they are not flavors at all. They are chemicals that contain no flavor of their own, rather they activate or block taste receptors in your mouth. The chemicals can mimic or enhance the taste of sugar, salt and monosodium glutamate (MSG), for example.

Do You Want to Eat Foods With "Flavors" Created by a Biotech Company?

Biotech firm Senomyx is at the forefront of the flavor enhancer market. As they state on their Web site:

"Using isolated human taste receptors, we created proprietary taste receptor-based assay systems that provide a biochemical or electronic readout when a flavor ingredient interacts with the receptor. To enable faster discovery of new flavors, we integrated our assays into a robot-controlled automated system that uses plates containing an array of individual fluid wells, each of which can screen a different sample from our libraries of approximately 800,000 artificial and natural candidate ingredients isolated from plants and other sources.

Our high-throughput discovery and development process allows us to conduct millions of analyses of new potential flavor ingredients annually. This efficiency is impossible to achieve using conventional flavor discovery methods. As a result, we have identified hundreds of unique potential new flavor ingredients that could not be discovered using taste tests alone."

Their products, which are intended to provide enhancements to savory, sweet, and salty flavors, as well as block bitter flavors and provide cooling taste sensations, are being marketed as a way to help companies "improve the nutritional profile of their products and/or achieve a competitive advantage maintaining or enhancing taste."

The idea is that a food company can use a Senomyx chemical to enhance the sweetness of sugar or savory flavors, allowing them to boast "reduced sugar" or "no MSG," giving the illusion that the product is healthier. In reality, it will contain a little-tested chemical that is NOT listed on the label.

Amazingly, these flavor-altering compounds are used in small amounts (less than one part per million), which means companies like Senomyx do not have to go through the Food and Drug Administration's (FDA) approval process typically necessary to release food additives. Instead of the lengthy FDA process, the compound only has to be classified as "generally recognized as safe" (GRAS) by the Flavor and Extract Manufacturers Association -- a process that can take as little as 18 months, with a mere 3 months of safety testing on rats.

As the New York Times wrote:

"Unlike artificial sweeteners, Senomyx's chemical compounds will not be listed separately on ingredient labels. Instead, they will be lumped into a broad category -- "artificial flavors" -- already found on most packaged food labels."

Many food companies have already partnered with Senomyx, so if you think this is a product you won't come across, think again. Among the food companies working with Senomyx are:

PepsiCo
Nestlé
Kraft Foods
Firmenich (a Swiss perfume and flavoring company)
Ajinomoto Group (makers of meat glue and aspartame)

Embryonic Kidney Cells from Aborted Baby Used to Create Tastier Junk Foods

Senomyx boasts that they have "discovered or in-licensed many of the key receptors that mediate taste in humans." But what they don't state so plainly is that they used human embryonic kidney cells (HEK 293) taken from an electively aborted fetus in their product testing.

When this news leaked, Campbell soup responded to an outraged public by severing all ties with Senomyx. However, PepsiCo has maintained their relationship with the company, saying the collaboration is necessary for creating low-calorie, tasty products for their consumers.

Really?

Must they really use human fetal cells just to make tastier junk foods?

There are many reasons why you're better off choosing natural whole foods in lieu of processed alternatives, but one of the primary ones is that junk foods contain additives that increase your toxic load, which in turn may increase your tendency to develop cancer.

Cancer is, by and large, a man-made disease caused by a highly unnatural lifestyle and continuous exposures to excess chemicals, including chemicals in your food.

It's easy to forget that the processed, pre-packaged foods and fast food restaurants of today are actually a radical change in terms of the history of food production. The frozen food business didn't begin until the mid 1920's when the General Seafoods Company set up shop and began selling crudely frozen fish fillets, and fast food restaurants didn't get a foothold until after World War II.

So it could be that the epidemics of cancer we're now facing is in part due to generational effects, caused by our grandparents' dietary changes.

And if that's the case, then we had better make drastic changes, and soon, because the disease trends we're now seeing are only going to get worse as much of the processed foods consumed today are not even food-based! Who knows what kind of genetic mutations and malfunctions we're creating for ourselves and future generations when a MAJORITY of our diet consists of highly processed and artificial foods that contain substances never before consumed by humans in all of history.

It's a frightening prospect, to say the least.

How to Enhance Your Food's Flavor, Naturally

When choosing what to eat, I highly recommend you focus your meals on real food, and remember "food" equals "live nutrients." Nutrients, in turn, feed your cells, optimize your health and sustain life.

When you eat real foods as opposed to "food products" like the ones being produced by Senomyx, you don't need artificial, lab-created "flavors" or flavor enhancers, because real foods taste delicious. The fact that processed foods taste good is the culmination of a profitable science of artificial flavors, enhancers and additives, without which most processed food would taste and look like cardboard.

Real food naturally has vibrant colors, rich textures, and is authentically flavorful. For times when you want to add even more oomph to your meals, nature has provided herbs and spices, which are not only incredibly tasty but also will make your real food even healthier.

Alpha-1 ANti-Trypsin Deficiency Information and Link

Central Arizona Rare Disease Support on Facebook

While AAT is not considered a rare disease, the fact that it is seldom diagnosed makes it similarly perplexing to the medical community. AAT is often the cause of emphysema in those who do not smoke and cirrhosis in those who do not drink alcohol.  Here's another link to an article that gives valuable detailed information about the condition:

http://www.mesothelioma-asbestosis.info/Lung-Diseases/alpha-1-antitrypsin-deficiency

 Thank you!

Information and Link on NASH (Nonalcoholic Steatohepatitis)

NASH, commonly called "fatty liver disease" affects approximately 2-5% of the population, most often occurs in those who are mid-life, but can occur in children. NASH can occur in those who do not drink alcohol and is a non-contagious form of hepatitis that can lead to cirrhosis.  Here's a link to a good article on the subject:

http://www.digestive.niddk.nih.gov/ddiseases/pubs/nash/

 Thank you!

 

Anaphylaxis: Potential Allergens

Hi Everybody!

Here is another article from the Idiopathic Anaphylaxis Information Center concerning substances that are known to cause anaphylaxis.  Again, most information about possible allergens in connection with anaphylaxis and mast cell disorders. We continue to be amazed at how much information is available and how little of it patients see because it may be available on a website that we are not aware of, which is why we are sharing this information with you on both our Facebook page, and here on our blog.

Allergens - IA Info Center

www.iainfoctr.com

A list of allergens that have caused anaphylaxis, with references.

Central Arizona Rare Disease Support

Histamine — Beyond mast cells

Hello Everyone! 
Here is a link to the Idiopathic Anaphylaxis Center to an article concerning histamine release in connection with mast cell disorders and anaphylactic reactions.  Candace Van  Aukenhas done a wonderful job of breaking down the synthesis of histadine to histamine in the foods we eat. This is fascinating for anyone who suffers from a variety of chronic diseases such as those which are caused by mast cell proliferation, urticaria, cystitis, IA, and many others. This certainly provided me with information I had never seen before.  We hope you find this as valuable as we do!

Histamine Article - IA Info Center

www.iainfoctr.com

Article - Histamine: Beyond Mast Cells - in the Articles section of the Idiopathic Anaphylaxis Information Center.

Central Arizona Rare Disease Support

Swell: Hereditary Angioedema Movie

Hi Everyone!
We wanted to share a link to a new film about Hereditary Angioedema (HAE) that gives a lot of interesting and valuable information about the condition, its symptoms, and other resources having to do with the disease.  We hope you take the time to watch this video-it really gives a good in-depth explanation of the syndrome and its affect on daily living from the perspective of patients that have had to live and work around the disease. We'll also be posting and article on HAE soon, but we thought it was important to spread awareness for both HAE and for this film.  Thank you so much!

SWELL Documentary Home Page

www.swellmovie.com

Swell is a documentary film that showcases the lives of people suffering from a rare, genetic disorder, Hereditary Angioedema (HAE). Upon viewing the film, you will not only learn first-hand what it is like to suffer from the disease, but also how it affects family, friends and loved ones.