Thursday, August 28, 2014

Get Whipped 4 NF

The challenge was born on August 23, 2014

After seeing the success of the Ice Bucket Challenge for ALS...I KNEW that it was possible for SOMETHING to be done for Neurofibromatosis.  The NF community was begging to be heard and desperately in need of the kind of attention that was being given for ALS...Something I knew very little about...That is....Until people across the country began dumping buckets of ice water on their heads.

It's a phenomenon....Something simple, fun, fairly harmless....That took off!!  I watched in amazement when my sons karate school 'took on' the challenge, standing on ladders and filling buckets-- So simple!

I understand that the ice water dumped on you, is supposed to simulate what it is like for those living with ALS...and what their muscles and nerves go through, as the disease progresses....

But I couldn't come up with anything that would help someone understand what it is like for someone living with NF....Aside from the GREAT ideas floating around like using sharpie marker and coloring on your get people to know what it's like to be stared at....To be different....

Now whip cream really has nothing to do with NF....Except, it is bringing people together!  The laughter and smiles I have seen, as this 'challenge' grows, is AWESOME....And if all this challenge does, is bring a few happy moments into peoples lives...Then I would say that is a successful challenge!

It's simple....If you haven't been 'nominated' ....Then START!  Simply video yourself - saying who/how NF affects your life....OR who talked to you about NF...Then SPREAD THE FUN!!!  SMASH--SMEAR--RUB--SQUIRT whipped topping all over your face!

Don't tell me that it doesn't look like fun......

Reggie Bibbs and Lou Congelio

 Meg Leaf

Tracy Grgeorash-Brennan
Manitoba Neurofibromatosis Support Group

Lyndon Demers
Manitoba Neurofibromatosis Support Group


My Mommy

Bailey Boo

My daughter Rachel

My daughter Riley


1 comment:

  1. I have NF and yes we need our own ice bucket challenge because our disease is a lot more common than ALS. Find a way to publicize the whipped cream thing for awareness and donations to NF related charities.