Friday, August 7, 2015

August is Ice Bucket challenge month.

https://www.facebook.com/lynn.schlieff/videos/10207128861682838/?l=1882769122155038055

Click the link above to see day 6 of our ice bucket challenge!!

We are in day 7 of our ice bucket challenge.  We're taking the challenge every single day this month and challenging our friends!  August is now "every August until a cure" month in the ALS world.

So really, what's the deal?  Are we asking you to pour a bucket of ice water over your head?  In a word, yes.

Why?  It's not about the shock value of it, although that's fun!!  Before Luther got ALS, I didn't know much about it.  When I tell people he has it, I get a blank stare.  So then I say he has Lou Gehrig's disease.  Sometimes people know that name.  Then I say, you know, the disease that got everyone to pour a bucket of ice over their heads.  Ohhh!  Sure!  But I don't think many really know what ALS is all about.  Why would you?  There isn't a ton of media (until last year).  Not a lot of people get it.
 
Sure, the ice bucket challenge is about raising money.  But if you don't donate, that's ok.  We all have charities close to our heart.  We have immediate financial needs.  We can't donate to every cause that comes across our Facebook pages.

This comes down to awareness and support. When you take the challenge and then challenge three more friends, you're creating awareness about ALS. That's become important to us.
The more people who know there is no treatment or drug to slow the disease (ok, there's one drug with awful side effects that has shown to slow ALS by three months) as well as no remission, no cure, the more understanding about ALS, the better.
You don't have to pour ice water over your head but it is fun to see! smile emoticon You don't have to donate anything. In the days, weeks, months to come, as Ed's health and mobility decline and our life changes, what's become most important to us is your support.
Knowing that you rallied during this month, seeing your posts and videos does more than you know for Ed's spirit. Mine too. ‪#‎everyaugustuntilacure‬



No comments:

Post a Comment