ALS Action Month. #everyaugustuntilacure #whatwouldyougive

 
While the awareness around ALS has changed over the past year, the urgent need to find a cure has not. Every day I see friends pass away from this disease. Kids lose parents. Husbands lose wives. Parents lose children. I see friends who a year later can no longer walk. Can no longer speak. Can no longer breathe. I feel my own body breaking down. The other night I dozed off on the sofa and when I woke up the first thing that caught my eye was a school picture of Mary Adair and James. Arm and arm on a bench, smiling, excited to take on the world together. I just laid there a while looking at it, smiling back at them, but then when I struggled to generate enough momentum to sit myself up, all I could think of was what else they were going to have to face together. Why do these two amazing, happy-go-lucky kids have to face this situation? Same for their mom. There are things I can come to grips with with ALS, and there are things I will never be able to.    

The need to find a cure, the need for research dollars is still as real now as it was a year ago. Funds change what is possible. They change how fast we can push the search for a cure.

I hope you will join Sarah Coglianese’s #whatwouldyougive campaign benefiting ALS Therapy Development Institute (https://www.classy.org/events/whatwouldyougive/e82638). If you are friends with me on Facebook, you know how incredible she is. Two years ago Cara and I loved getting to meet her and Rob at ALS.net’s gala and I selfishly need a cure to be found so we can be friends for a long, long time. What else will I do at work if I don’t have her blog to read?
  
 
Her campaign is off to an incredible start. For one day give up an ability that those of us living with ALS have to do without. Rely on someone else to drive you around, to cook for you, to cut your food, to get you dressed, or to brush your teeth. Use a text to speech app on your phone to communicate. If you don’t want to impose on those around you, then act as a caregiver (cALS) and be at someone’s beckon call. Serve them all their meals. Clean up after them. Do their chores. Watch them every minute to make sure they can still breathe. #whatwouldyougive for a loved one to avoid this fate?Sign up at https://www.classy.org/events/whatwouldyougive/e82638 and get your friends to support you. 

However you wish to do it. support families living with ALS. Support research to end this disease. Support ALS.net.
 

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One thought on “ALS Action Month. #everyaugustuntilacure #whatwouldyougive

  1. We lost an amazingly strong and funny man today Bob Bardone of St. Louis. He fought this horrific disease with such class,dignity,humor and love for his wife, children and grandchildren. His motto was “We will Never Give Up” and he didn’t. We loved you dear brother-in-law, uncle and friend. Please expand the research and allow those afflicted to choose the right to try the new drugs. We KNOW Bob would be with us had he been afforded this right. You are at peace dear Bob and we will miss that handsome smiling face every day. God Bless!!🙏🏼💔

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