ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, May 25, 2011

Awareness Is Imperative To Solving This Mystery

The fight against ALS ignorance needs this kind of leadership. Following was posted on the ALS Association's facebook wall:


Mr. John Hogan, President
Clear Channel Corporate
200 East Basse Road
San Antonio, TX 78209


Dear Mr. Hogan,


I am writing this letter in response to comments made on the Walton and Johnson show on Monday, May 16th. During their time on the air they made comments about Stephen Hawking and his battle with ALS. The comments were ill informed and offensive to the over 30,000 people and their families who struggle with this disease every day. As President and CEO of The ALS Association, I invite your station to join our efforts to educate people about this terrible disease. Our mission is to “lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.”

As the only organization dedicated to this fight on all fronts, I hope you can understand why we were offended by the on-air remarks. ALS is a deadly disease that robs people of their body but not their minds. Within a trapped body, a person suffering from ALS lives with the daily challenge of communicating with their loved ones as well as the outside world. As you can imagine, many of these people listen to your radio station as a link to the outside world which is one reason the comments were so insensitive. ALS patients struggle each and every day with a disease that has no known cause and no cure. Piece by piece their bodies are robbed of everything but their ability to think. If you will, think about being perfectly still—not even so much as a blink for two or three minutes, and then imagine what that is like for someone 24 hours of every day.

I would like to direct you to our website at www.alsa.org so that you can be better informed about this horrific disease and the fight we are leading to help those who live with the disease. There you will find stories of courage and determination as well as stories that will break your heart. They are stories of mothers, fathers, sisters, brothers, daughters and sons who fight a battle none of us wish for them. It is a disease that can strike any one of us and knows no boundaries of age, race or gender. At any given point, someone within your Clear Channel family might very well be the next diagnosed case.

Awareness is imperative to solving this mystery. Please turn this negative into a positive by issuing a public apology. The ALS Association will be more than happy to supply you with educational information so that your listening public has the opportunity to help us in this fight.


Sincerely,



Jane H. Gilbert
President and CEO
The ALS Association

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