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.

Sunday, January 30, 2011

Mark Your Calendars -- Annual Worldwide Weekend of Prayer For Those Dealing With ALS



May 6-8, 2011

Thanks for passing this information along to anyone who may be interested. This is a special kind of advocacy that has grown significantly every year.




Thursday, January 27, 2011

And So We Wait

Questions submitted on CDC ALS Registry website:

Are you able to tell us how many patients have self-enrolled so far?

When is the earliest that we might know if the registry data challenge any of the prior assumptions about the incidence and prevalence of ALS in the U.S.?

Thank you very much.

Response:
Thank you for your interest in the National ALS Registry.

The Registry began allowing persons with ALS to self-register in October, 2010. Before any data can be released, ATSDR has to have at least 2 years of data in the Registry to be sure that the information is complete, accurate, and representative of all ALS cases in the U.S. Please check our website for updates on when data will become available.

If you need further assistance, please contact the Registry system administrator at ALSSystemAdmin@cdc.gov or call toll free at 1-877-442-9719 (9am-6pm ET).
Thank you,

The National ALS Registry Team

Saturday, January 22, 2011

OK, ALS Organizations, It's Your Turn

Individuals have been adding the CDC's ALS Registry buttons to their blogs and websites. It's time for some of our major ALS organizations to get with it!

http://alsspreadtheword.blogspot.com/2011/01/curing-als-is-hard-adding-button-to.html

All together. Now. Please.

Tuesday, January 18, 2011

Nike Was Right - Sometimes You Need To Just Do It

The CDC's marketing of the national ALS registry has been less than impressive.

Sometimes you just need to take matters into your own hands. Let's do some simple things to remind people with ALS that they count and should enroll in the national registry so that they and their clues will be counted and used by researchers in the search for the cure.

Please, please, if you have a website or a blog or a Facebook wall, please post a link or a button to take people to the CDC's registry site.

Here's the link for the registry --

Here's a link that will give you a snippet of html code that will let you display a nice registry button with Lou Gehrig's picture --

ALS organizations who lurk here, please just do it. Everyone will benefit if we have comprehensive data on how many patients there are in the U.S. (hard to believe, but we don't have those numbers yet). The clues that they harbor just may unravel this mystery of a disease.

Individuals reading this, ask your friends and relatives on Facebook or with blogs to add a link or a button.

Just do it. It's simple. It's free. I't's important. It will work.

Please.

We Need To Keep Asking Qs Until We Finally Get Some As!

The apparent connections of athletes and achievers to ALS are mystifying and tragic. We must continue to ask the questions publicly and relentlessly until some answers are found.

Or do perhaps pay more attention when ALS steals an athlete than an engineer or a homemaker? So many questions. So few answers.

The Gazette
Montreal
by Jill Barker
January 18, 2011

Unravelling sports' links to ALS

Susceptible football, soccer, golf and baseball players are disproportionately likely to develop the disease, but no one knows why


Read more:
http://www.montrealgazette.com/news/Unravelling+sports+links/4124581/story.html#ixzz1BO3AQEUW

Saturday, January 8, 2011

It's A Small World, After All

Sorry to get you humming. Anyway, here's an op-ed about people with ALS and the redeeming social value they find in Facebook --


If there were ever a disease that screamed for smart use of online communication and support, it's ALS.


Thursday, January 6, 2011

Did Vice President Biden Ask What The Red Wristbands Are About?


We hope so!



And in the video below, hear what Senator Murkowski has to say about 48 seconds from the end!



Yesssssss!

Just Suck It Up

...and fight harder and smarter to raise awareness and research efforts to figure out the mystery of ALS so that we stop losing such fine human beings!

Monday, January 3, 2011

ALS Advocacy Survey Results Are Available

Thanks to all who took the time to participate.

Click here to download results document.

The comments are interesting, and there are certainly some diverse ideas. Let's hope that they add some new energy and perspectives that will give some punch to the fight against ALS 2011!

If anyone would like to receive the plain old pdf, please let me know and I'll be glad to send it along.

Saturday, January 1, 2011

Thank You, Tony Proudfoot

When an athlete is cut down by ALS, it is especially cruel. When a broadcaster is cut down by ALS, it is especially cruel. Tony Proudfoot got the double-whammy, yet he decided to use his voice to tell the world about this outrageous disease.

We have lost another powerful advocate.



And the questions persist about athletes and ALS...

http://www.thespec.com/sports/ticats/article/307937--goodbye-tony
It did not take Lou Gehrig’s disease—and the torturous symmetry that his roommate from his Alouette playing days Larry Uteck had also died of it—to demonstrate Tony’s courage and dedication. That was in the bank long ago.