On Thursday, May 10 the ALS Association, CT Chapter held a great event in Westport, CT that was to be a Thank You to many in my community that have been affected by ALS and to those who are fighting in so many ways to help find that elusive cure
I was honored to be presented with the David Grimshaw Beacon of Light Award. As I continue to try to empower others to live life to it’s fullest, there’s more work to be done as an advocate and to spread awareness. We will find a cure!
My remarks at the event…
About David Grimshaw
David Grant Grimshaw
1/24/56 to 4/30/01
On April 30th, our chapter lost a special man, Mr. David Grant Grimshaw. David served as President of the Black Rock Community Council for 4 years; he helped to establish the Burroughs Community Center in Bridgeport; he was co creator of Bridgeports Lobsterfest; and he was instrumental in the restoration of the Fayerweather Lighthouse at Black Rock Harbor. David was also an internationally known artist. David was diagnosed with ALS, or Lou Gehrigs disease, on his 40th birthday. David then became chairman of The ALS Association Connecticut Chapter. Below are some examples of Davids work, as well as photos of David with close friends and family. David will be sorely missed by many.
As I pondered how best to do my part in spreading awareness to ALS this month, I wavered between writing something poignant or making a video and free styling. It occurred to me that telling my own personal story might make a bit more of an impact.
I have not shared what you will see me talk about in this video with many people. I talk from my heart, unfiltered, unrehearsed and parts are raw and may be hard to hear. Please excuse any use of mature language.
What you see here is me. A person living with ALS.
I hope this brings more awareness.
Someday, every month of the year will be ALS Awareness Month!
This song kind of says it all for me…
Sunsets over the beaches from now on
Each day looking for new ways to go on
Slow burn watching the world turn from my arms
New way of measuring each day till it’s gone
Sunrise building a reprise in my heart
Regret tight around my chest plays its part
‘Till it’s gone
But to shower you with pity would do you no good at all
No good at all
Now watching the sunset, sunset, sunset, sunset
Over the beaches, beaches, beaches, beaches