“Shut Up & Cure ALS” Week of Silence Intro

By April 30, 2016 Mom's Blog No Comments

“During my “Shut up & Cure ALS” Week – I am not talking for an entire week …Yep, 7 days, 168 hours,  10,080 minutes.   I’ve had ALS for 12 years & I’m lucky to still have the ability to speak.  So why am I going silent???”

For the past 12 years our family has been trying different ways to raise awareness for ALS.  We’ve all spoken up and reached out in many ways.  We’ve been at it for 12 years …educating others about ALS and why they should help us find a cure.

I feel like we’ve said it time and time again – Fatal.  2-5 years.  No cure.  No known cause.  Random.  Veterans twice as likely to get it.  It made me wonder, if we’ve said it over and over, what if we didn’t say anything at all.  Coupled with the fact that weakening of my diaphragm is affecting the volume of my speech… Perfect!  Let’s see if we can create awareness by not saying anything at all and at the same time call attention to just one of the abilities that ALS steals from patients- the ability to speak.

It’s not going to be easy that’s for sure.  But that’s the point – I’m wanting to make a great sacrifice in order to encourage others to stop for a few minutes and take action.  If you “Speak Up & Cure ALS” while I am silent, then it will all be worth it.  We hope you’ll visit my son’s website, www.kids4cure.com & do the following:

  1. Become an ALS Advocate. (this is super easy & takes less than 2 mins)
  2. Donate.  (all $ goes directly to the ALS Association for research & patient services)
  3. Follow Us! Facebook, Twitter, Instagram

I’ll be blogging here daily during my “Shut Up & Cure ALS”.  Thank you for your support!


Lorri Carey

Lorri Carey
I’ve been living with ALS since I was diagnosed at age 38 in 2004. My family & I are active ALS advocates & fundraisers. My sons, Paul & Christian created a platform, Kids4Cure, at the ages of 13 & 11 to help find a cure for ALS. To date, Kids4Cure has raised over $800,000 for ALS research & patient services. I consider myself one of the “LUCKY” unlucky ones. I have been blessed with more years than most ALS patients. I am honored to advocate on behalf of those who cannot until we have a world without ALS.