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, December 30, 2009

ALS Awareness - The Year 2009 In Review

It all boils down to one determined, talented man with ALS and one glorious day in Major League Baseball last July 4. This was the pinnacle of ALS awareness. This showed ALS to millions of Americans. This reminded us all of our continuing cluelessness about Lou Gehrig's Disease. ALS took Michael Goldsmith from us in 2009. Can we follow his lead in 2010?

Tuesday, December 22, 2009

Department of Defense Funding Continues Via ALSRP

Following is an announcement from the ALS Association Washington, DC, office regarding the funding within the DOD appropriations legislation that was passed by the Senate on Saturday:

http://www.alsa.org/news/article.cfm?id=1574

The U.S. Senate has appropriated an additional $7.5 million for the ALS Research Program (ALSRP) at the Department of Defense (DOD), a 50% increase over last year!

Lest We Break Our Arms Patting Ourselves On The Back For Our Accomplishments

This morning I googled for "DOD appropriations ALSRP" and found this --
http://schemera.blogspot.com/2008/10/not-enough-dammit.html

It's over a year old, but it's pertinent.

Click on the pic of the hockey team to go to the most recent item on that blog.

Read one young man's tortuous journey trying to survive ALS.

He was right. It wasn't enough, was it?

Friday, December 11, 2009

ALS Registry Development Funding Continues

Following is a statement issued yesterday (December 10) by the ALS Association Washington, DC, office:

A few minutes ago, the House of Representatives passed legislation that will appropriate an additional $6 million for the National ALS Registry at the Centers for Disease Control and Prevention (CDC). This is a 20% increase over last year and demonstrates that Congress has made funding for the Registry a top priority - something that would not have happened without your efforts to contact Congress and tell them why more must be done in the fight against ALS.

The Senate is expected to vote on the bill as early as next week and we will keep you updated as the legislative process continues.

Registry Begins to Collect Data
As we reported earlier this year, the CDC is in the process of identifying ALS cases from throughout the United States utilizing data obtained from national databases, such as Medicare, Medicaid and the Veterans Administration. The Agency also has launched the first phase of the ALS Registry website. When fully launched in the second half of 2010, the site will enable people with ALS to self enroll in the registry.

However, the additional $6 million in funding provided by Congress not only will allow the CDC to continue its current efforts, but also potentially conduct more robust data collection at the state and local level in order to identify any cases that are not captured through the web portal and national databases.

For additional information about the National ALS Registry, including about the web portal and how people with ALS will be able to enroll in the registry, please click https://ssl.capwiz.com/alsa/attachments/2_ALS_Registry_Update__Dec_2009_.pdf

Thank you to everyone who has contacted Congress and helped to make this victory possible!

Friday, December 4, 2009

Curtain Up! Light The Lights! Take II


Rumor has it that on CBS Sunday Morning, Angela Lansbury will be interviewed by Katie Couric, and Ms. Lansbury's work for the ALS Association will be mentioned.

The great news is that Katie Couric understands ALS from her work with the Estess family and Project ALS! Here's hoping that they both badger away at our existing lack of ALS awareness and national resolve to find the cure.

Perhaps Angela Lansbury's work in the new production of Sondheim's "A Little Night Music," will earn her another Tony Award, and that this time we might see a red wristband and hear a mention of ALS on Tony night. In the meantime, we'll be watching on Sunday morning.

CBS has already covered the Sondheim Award to be presented to Angela in the DC area in April, 2010 (just few weeks before Advocacy Day). http://www.cbsnews.com/stories/2009/11/05/ap/entertainment/main5537411.shtml?tag=contentMain;contentBody Oh, that there might be some dramatic flair to give ALS a little splash and spotlight at that gala.