Friday, May 31, 2013

ALS Awareness Month wrap-up...

Wearing my Sam's Twysted Ride t-shirt
This month I set out to raise ALS awareness.  I made eight specific commitments on day one and, throughout the month, I followed through on all but one of them.  (I had planned to attend an event on May 24th  with the MDA but they cancelled the event and, therefore, I was unable to attend.) 

I posted a blog entry every day, all month long.  I wore a Sam's Twysted Ride t-shirt at least twice a week, often more.  I asked my family and friends to wear their Sam's Twysted Ride t-shirts too and I received pictures of some of them doing just that (thank you to all who participated in this).  I was not able to attend the cancelled MDA event, but the garage sale was very successful and we raised $114 for ALS Association's Change for ALS fundraiser.  The garage sale also proved to be a great place to share my story and spread ALS awareness to the many people who asked and donated.  I tried two different eye-tracking devices and, although neither worked for me as the solution to my future communication concerns, I did blog about my experience and plan to keep trying new technologies as they become available.  I shared my personal ALS story on ALSA's and MDA's ALS Awareness Month websites, I read stories by others whose lives have been affected by ALS, and I shared their stories on Facebook and Twitter throughout the month.  I have new followers for the blog, thanks to your helping to spread awareness…thank you so much! 

The thing I struggled with this month was living with ALS in the forefront of my life.  This was an unexpected side effect of blogging everyday.  Usually, though ALS affects me everyday, my focus is on living my life, adapting as needed to the changes that occur, but ALS is generally not the central focus of my life.  So, this has been a long and emotional month for me. 

I am proud of my family, my friends, and myself for taking part in this ALS Awareness month and I know that our efforts will continue until a cure is found.  Until then, know that I am grateful to all of you for your love and support as I continue to live my life everyday with love, laughter and…with ALS.


  1. You have become an amazing advocate for ALS! Job well done. Your words speak to those who's lives are affected by ALS as well as to anyone who experiences life's challenges. Hope and love are powerful messages. I am proud to know you.

  2. Hello, I am sorry about your fight with ALS. I am a son of a person with ALS. I wanted to do something about ALS for him and for others like him. However, I need help, and I want to make sure that others like my father are interested in this project.
    Please visit and feel free to provide feedback.
    Thank you.