Tuesday, May 24, 2011


Advocacy days in Washington, DC 2011

I remember when John and I went last year and being so overwhelmed. Seeing the many others affected by ALS and knowing we are new to this with and thinking to myself I can't get worse. Then on Capital hill watching and listening to others as they shared their stories and then it was my turn. You could tell I was a bundle of nerves , even though I cried John held my hand and I was able to finish. Afterward he hugged me and said great job. Then we went to the next office and continued throughout the day.
Well this year was amazing and not overwhelming, I think knowing what to expect has helped. Meeting many of my ALS family from facebook helped out tons as well. The fact is the disease has moved to all of my limbs and my speach is affected. But what I am most amazed at is the compassion and strength, courage that everyone has. Hearing how every person affected by ALS is affected differently and like me they are fighters. We all come from different walks of life no one cares about how much money you have or what your wearing. We all have one thing in common... ALS and we want a cure and treatment. With many illnesses there are treatments and cures. ALS doesn't have either and it's the most fatal disease around. 70 plus years you would think at the very least a treatment, not ALS.
The whole conference was moving and yes at times some what emotional but it was great being able to help make a difference.
This trip gets me thinking of ways to raise awareness and to get involved even more. As I've said before I would love to be the "poster child " for ALS. But thinking at it don't we all?
Maybe this year we will find a cure. Until then I made a promise to myself and others to attend advocacy days each year and to fight with all I've got to beat this.
They say May is ALS Awareness month... Want to know what I say?... Every day is ALS Awareness day. So please support your local ALS Organization to help me and others find a cure.