Wednesday, August 20, 2014

#WAGRzebrachallenge ~ WAGR Wednesday

Some people are annoyed by it…some people wonder if it’s really doing any good…and others, like me, marvel at the brilliance of a simple call to action and how it’s taken the world by storm.  What is it?

The #ALSicebucketchallenge.

If you haven’t heard of it, then you may need to check and see if you’ve accidentally taken up residence under a rock.  (Or, you may not have internet access, which could significantly hinder your exposure to this media blitz.  I do not judge you; on some days, I actually envy you.)

Here’s the premise…in very general, short form:

You challenge a number of your friends (by tagging them on Twitter or Facebook) to follow your example, and someone records a video of you either dumping a bucket of ice water on yourself, or you having someone else dump a bucket of ice water on you. 

When you challenge your friends, some have been mentioning that you should donate $10 or so to the ALS research; others have been noting that if you don’t accept the challenge you should donate $100 to the ALS research.  According to several sources, there are a number of groups who have benefited from this awareness movement, including, but not limited to:

Do you know how awesome the ice-bucket challenge is?  

I’m not talking about the money.  I’m not talking about the entertaining value of seeing hundreds of thousands of different spins that people are putting on their videos to make it fun to watch.

I’m talking about awareness.
I’m talking about knowledge.
I’m talking about making ALS important in the research community, and making it better known.

But what I’m really talking about is WAGR Syndrome.

In science, in research, the big question is often “probability”.  Probability is how likely something is to happen.

There is no real known probability for the incidence of WAGR syndrome.  Why?  Because it is THAT rare; because we are talking about only a few hundred documented cases in the ENTIRE WORLD.

So, we know that 50% of the people who have WAGR will get Wilms Tumor.  Okay…that stinks.  Cancer sucks, we all know that.  But, translate that to your OWN personal family.  If 50% of your family got cancer, how would you feel?

Now, let’s look at recurrence of Wilms Tumor.   That’s a very LOW incidence.  We’re talking 1.5% to 3% (with one tumor on one kidney and another later developing on the other kidney) according to an article abstract I found on-line  This research doesn’t appear to include specifically those who are genetically pre-disposed to Wilms Tumor though, like those with WAGR syndrome.
But let’s play with that number!  Let’s do some math with  3%.  

Three percent means, if we have 100 people with WAGR syndrome, and 50 of them develop Wilms Tumor (which is statistically supported), then we say 3% will have recurrence, that is 1.5 patients.  Between 1 and 2 of our WAGR families would have a recurrence.  If we know 200 families with a patient with WAGR, then 100 of them will receive a Wilms Tumor diagnosis, and 3 of them will have a recurrence.

Mind you, those are low-ball numbers, because we know that people with Wilms Tumor are pre-disposed to Wilms so they will be pre-disposed to recurrence.

What does this have to do with the ice-bucket challenge? 

We need to raise awareness of WAGR syndrome around the world. 
We need to find more families with WAGR in order to gather the data we need so we can produce the statistically significant numbers that make doctors take notice.

Doctors won’t typically recommend 3-6 months kidney screenings after age 8 for a risk percentage of 3%.

Doctors MAY make a recommendation of 3-6 months kidney screenings after age 8 if there’s a 20% recurrence.

My daughter is at the age where the typical recommendation from Wilms Tumor protocol would say to screen the patient just one time each year.  But in WAGR syndrome we know Wilms has been found at 12 year and up to as late as 25 years old.

When doctors say, “The odds are small that she’d develop a recurrence now at this late age…” I want to say, “Oh, and were the odds small that I would have a child with WAGR syndrome?” 
Microscopic odds.
Don’t talk to me about odds.
I’m a mom who has a child who defies odds.
So, the fact is, I would be OVER THE MOON if I saw a bunch of people hash-tagging #WAGR something or another.  Would it be great to see a bunch of donations to the International WAGR Syndrome Association?  Sure!  Here’s the link:
But that’s not my motivation.
I’m sending out a call to action to raise awareness of WAGR syndrome through the #WAGRzebrachallenge.  Simply post a picture of yourself with either:
  • A person with WAGR syndrome
  • A live zebra
  • A stuffed zebra
  • A person dressed as a zebra
On whichever social media networks you prefer!   
Don’t forget to use the hashtag #WAGRzebrachallenge, AND most importantly, don’t forget to challenge your friends and family to do the same.   

You could something as simple as:
I’m showing my support for people with WAGR/11p deletion Syndrome by posting a picture of myself with a zebra!  I challenge ________ to do the same in the next 24 hours!  #WAGRzebrachallenge to learn more!
I want to see how many posts we can get over the next week.  Next Wednesday, I’ll report back to you on how effective this challenge was.  
What are the odds that I can find 300 posts with the hash tag #WAGRzebrachallenge?
 What are the odds that YOU will do this and make a difference?
My guess…the odds are in our favor…

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