ALS Awareness Month is Here!

Today marks the beginning of ALS Awareness Month. Another year has gone by in our battle against ALS. Even with all we have accomplished this year, this month always seems to remind me of how much is left to do.

This month The ALS Association, Michigan Chapter will be posting the stories of our PALS each day. We hope that it will serve as a reminder to all that we must never tire in our advocacy for those affected by this terrible disease. We will be asking that anyone willing please send us their story and a photo so that we may share these not only on this blog, but during our visit to Washington DC next weekend. Members of our staff and volunteers will be meeting with Michigan Senators and Congressmen to ask for their continued support for the National ALS Registry and for $15 million dollars in funding for ALS research through the Department of Defense. Please consider helping us in our efforts by sharing your ALS journey. You don't have to be a PALS to write a story. Everyone who has had their life affected by this disease is welcome to contribute.

I know that asking others to share this often emotional story can be difficult, so I thought I would start this month of stories with why I am an ALS Advocate and how my life has been impacted by Lou Gehrig's disease. My dear friend, Regis Kleiss, is just 27 years old. He has had ALS for 3 years.

I met Regis while we were still in high school. He was an extraordinary athlete and the picture of health. He was an active, strong young man who hoped to be a mechanic. We have remained friends through the years, and I have been witness to Regis's battle with ALS.

Last night, I attended Regis's birthday party. I bent beside his power wheelchair to listen to his quiet voice and helped him to eat his meal. I gathered with 20 other members of his family and friends to celebrate in his honor. Despite being contained in his chair, Regis beamed. His vibrant spirit transcends his disease. And though it broke my heart that he could not clap along with the music with the rest of us or sing along with band, his demeanor renewed my dedication to what I do.

I will participate in ALS Advocacy this month for Regis and for every other PALS and family I have the honor of working with on a daily basis. Thank you, Regis, for allowing me to share your story and to advocate on your behalf. I know someday we will find a cure!