Old 10-08-2009, 08:53 PM #1 (permalink)
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Thumbs up Als registry set to go in 2010

(Apparently the funding bill went through?) I'm sure others received this e-mail from MDA, but for those who didn't:

Government announces plans for national ALS Registry in 2010

The federal government has released preliminary details about the new National ALS Registry, which will be launched in late 2010. The National ALS Registry was funded by the federal government in 2008, following passage of the ALS Registry Act. It will scientifically collect, manage and analyze information about people with ALS to help researchers better understand the disease.

Registry data will be used to estimate the incidence and prevalence of ALS, promote a better understanding of how the disease develops and provide data to researchers about improving disease management and developing better standards of care.

A list of frequently asked questions (FAQs) about ALS and the registry can be viewed online at CDC - Amyotrophic Lateral Sclerosis.

Welcome to MDA-ALS Division, Helping Jerry's Kids
Scott Wiebe
Director - Outreach Initiatives & ALS Division
World Leader in ALS Research and Services


(Hope I live long enough to get on it ... and maybe hear some preliminary results!)
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Old 10-08-2009, 11:09 PM #2 (permalink)
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Default Re: Als registry set to go in 2010

That is wonderful news thanks for posting this thread
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Old 10-09-2009, 06:26 AM #3 (permalink)
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Default Re: Als registry set to go in 2010

Beth, I posted this to another thread! YIPPEEEEE!
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Old 10-09-2009, 06:37 AM #4 (permalink)
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Default Re: Als registry set to go in 2010

No, we still NEED FUNDING! I hope it is ok to post the ALS Action Alert that I received on 8 October 2009. Here it is and I am also going to post it as it's own topic/thread. [hope that is ok Joel C]









My name is Jeff Faull and I am the married father of two beautiful daughters. I was diagnosed with ALS in 2007 at the age of 38 after serving two tours of duty in the United States Navy. I am writing to ask that you join me in urging Congress to increase funding for the ALS Research Program (ALSRP) at the Department of Defense.



The ALSRP is the only program at the DOD dedicated specifically to ALS, a disease that strikes veterans at twice the rate as the general public. But what really makes this program so vital is that it is supporting translational research with the explicit goal of finding a treatment for ALS - something that will benefit everyone fighting this disease.



Earlier this year, I joined nearly 1,000 fellow advocates - PALS, caregivers, families - in Washington, DC for National ALS Advocacy Day. Together with my wife Tammy and 15 year-old daughter Tiffany, we met with our Members of Congress and requested they provide $10 million for the ALSRP, double what was provided last year. I am proud to say that our meetings made a difference - The House of Representatives met our request and passed legislation that included $10 million for the ALSRP!



But, the fight is not over. That's because the Senate version of the bill does not include funding for the ALSRP. And with a House-Senate Conference Committee expected to make the final decisions on funding for the Department of Defense within the next week, it's possible they may eliminate funding for the ALS Research Program.


That's why I'm asking for your help today. Available on The ALS Association's website is a letter you can send to your Members of Congress. Please use that letter to tell Congress how important this program is to those of us living with ALS. Let them know that research made possible by the ALSRP not only will benefit military veterans, but all people with ALS. It can help us find an effective treatment for a disease that currently has none.



The letter can be found here: Public Policy - The ALS Association. Please act today. It's simple to do, but it can mean the difference between $10 million for ALS research or zero. So join me in this fight. Together, we will continue to make a difference.



Sincerely,



Jeff Faull

McEwensville, PA

Dx 2007



P.S. At National ALS Advocacy Day in May, I had the honor of participating in a wreath laying ceremony held at Arlington National Cemetery to pay tribute to those we have lost in the war against ALS. Joining me for the ceremony were fellow veterans and PALS Jim Thew of Illinois and Ken Patterson of Florida as well as Sharon Harrison of Virginia, who lost her husband, a Vietnam veteran, to ALS.



The ALS Association produced a video of the ceremony to help raise awareness of the disease and build support for our cause. I invite you to view the video here: Wreath Laying Video - The ALS Association.



As Veterans Day approaches on November 11, please share this video with everyone you know. Post it to your Facebook page, send it to your email list. Help us continue to raise awareness of this disease and its impact on veterans and all Americans. Most important, help us build support for our cause so that we can find a treatment and cure as soon as possible.



Thank you!
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