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Our Site... "One in a Million"

June 1st, 2007

Have you ever heard the expression "One in a million?" I am sure most everyone has. I'd like to try and explain what "one in a million" means to me.

The chances I would have a child affected by Tay-Sachs disease seemed like "one in a million." I had never even heard of the disease before my child was diagnosed with it. Now we battle with the "one in a million" odds that we can find a cure in time to save my beautiful daughter.

We all think the odds are so remote, we don't need to worry about the hundreds of rare disorders. When the odds catch up with you, everything changes.

Let me try and put it into perspective for everyone...

Let's assume that I had a bowl of your favorite candy, whatever kind it might be. We had one million pieces of candy in the bowl and I told you to help yourself. Eat as much as you'd like! Some people would eat a little, others more, and some (like me) would gorge themselves.

Now assume that bowl contained just one piece of candy in the million that could kill you. Would you eat any candy? I doubt many people would take that chance.

When we equate this to Tay-Sachs disease. Did you know that if your heritage is Ashkenazi Jew, Louisiana Cajun, or French Canadian, your bowl contains 37,000 pieces of candy that make you a carrier of a disease that kills 100% of the children it affects.

If you are Irish-American, your bowl contains 20,000 pieces of candy that makes you a carrier of this fatal hereditary disease. And finally, if you think "I am not any of those ethnic groups so I am safe," think again! Your bowl still contains 4,000 dangerous pieces of candy. Now I am sure NO ONE would eat candy with those odds stacked against them. The problem is...you already have.

We are not really talking about candy here – we are talking about a hereditary disease. At best, there is still a 1 in 250 chance that you carry the Tay-Sachs gene; at worst, the odds are 1 in 27.

Having the gene does not put you at risk but will you pass it to your child? Is your husband, wife, or significant other a carrier? Two carrier parents have a 1 in 4 chance of having an affected child and today that means certain death at a very young age. Back to our analogy: that bowl has 250,000 pieces of candy that will kill your child.

Tay–Sachs is a hereditary disease characterized by non-existent or low levels of an enzyme generally found in brain cells. The cells in your body have over 70 enzymes and problems with any one of them can have significant impacts on your health. The enzyme missing in Tay–Sachs children is Hex-A. Hex-A breaks down the complex waste created in a cell and makes it useable energy. When the waste cannot be broken down, it clogs the cell up and ultimately kills it. The destruction of brain cells creates large motor problems, small motor problems, vision problems, swallowing problems, breathing problems, and ultimately, death.

No child has ever survived a diagnosis of Tay–Sachs Disease.

"One in a million" seems forever away when we are buying lottery tickets but it is a whole lot closer when we are talking about an untreatable, incurable children's disease. And the odds are not "one in a million" that you carry the Tay-Sachs gene. They are 37,000 in a million or 20,000 in a million or 4,000 in a million. That is quite a bit higher don’t you think?

What would you do to save your affected child? If you wait until your child is affected, you may not have enough time to help. Help today and we can find a cure before you need it. Tay-Sachs never stops moving on its own. We have to stop it.

The medical research in the arena of neurological diseases is moving very rapidly. The new model of research is a committed and determined group of people with a vested interest in promoting and funding research for a specific disease. We already have a motivated groups of researchers ready to do the work, we just need to raise the funds.

We don't need $100 million to do our research; one or two million just might be enough. As an added bonus, once we cure a neurological disease like Tay-Sachs, the ramifications will be significant for the 70+ other lysosomal storage diseases as well as other neurological conditions like Parkinson’s, Alzheimer’s and MS.

Please help us beat this horrible disease. Make a donation if you can. Pass this information along to your friends and ask them to come see our website and learn about our quest. Tay–Sachs disease can be cured. We have the research in place; the only thing holding us back now is money.

If we all give a little, we can do a lot.

Ken Bihn
President
Cure Tay-Sachs Foundation

 

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