Friday, August 22, 2014

The Ice Bucket Challenge for ALS, Why it matters to me...

Meet my Father In Law, Ken.  He passed away from ALS aka Lou Gehrig's Disease in 2005,  just a short 2 and 1/2 years after his diagnosis.   It was torture, pure torture watching ALS take its course on this man that I love dearly. I miss him and his absence is felt every single day in our lives.   

From the ALSA website:
Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord.  When these cells die, voluntary muscle control and movement dies with them.  Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.

It's a cruel disease, patients are trapped in these bodies that don't work.  It was hard... really hard on our family.  I wouldn't wish this experience on anyone. The road is lonely as families try to navigate each step of the disease.  It's a constant balancing act of learning how to cope and how to adapt.  Problems arise all the time and the cost of care and equipment is expensive.  It's a progressive disease so often each day is worse than the previous day.  Thankfully there is help, and for our family the ALSA, Los Angeles and Orange County Chapters provided a support network we could turn to.  They loaned equipment, coordinated support groups, and helped troubleshoot challenges.  Sometimes it was as simple as saying, "It's tough to hold a glass of water and get a good grip."  The ALSA care nurse said, "Try putting a thick rubber band around it."

(Pardon my terrible blurry video, making videos is NOT my forte!) 

Each and every time I see someone doing the Ice Bucket Challenge for ALS, I cheer.  This disease needs awareness.  Research on this disease is somewhat limited, as there are not enough victims for drug companies to find it profitable to expend research and development costs to find a cure.    The ALSA funds research in addition to providing services to ALS patients and families.   It's not a perfect charity, I can't seem to find a charity that is... but  they helped us when we really needed it and for me that is reason enough to donate. Make sure when you take the Ice Bucket Challenge to include the term ALS and point people to the ALSA or an ALS related charity.

What I'm trying to say is, this is a cause that needed this windfall of viral PR.  I know some folks have said that it's getting annoying and clogging up their Facebook feed. That is fine, but as for me I'm thrilled to see this all over social media.  We all have causes and charities close to our heart or that we champion, for now let's just let ALS take the spotlight for this moment.  As of Friday, August 22, The ALS Association has received $53.3. million in donations compared to $2.2 million during the same time period last year (July 29 to August 21). These donations have come from existing donors and 1.1 million new donors to The Association. Do you have any idea how many families this is going to help? 
 For all my friends and family who have taken the Ice Bucket Challenge for ALS, I want to give you a big heartfelt thank you.  It means so much to me and has restored my hope that one day this will be curable disease.  

Merci Beaucoup!  For more information visit:
To make a donation to the ALSA, click here. 

No comments: