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Senior member
May 17, 2007
Loved one DX
This is an E-Mail I received as an ALS Advocate from the ALS Association. December20th.

Additional $3 Million for the ALS Registry - Congress Adjourns;

Dear Lorie:

Prior to adjourning for the year late yesterday, The ALS Association secured a tremendous victory as Congress passed legislation to provide an additional $3 million in funding for the ALS registry at the Centers for Disease Control and Prevention. The funding builds upon and expands the pilot projects already underway at the CDC and represents a $2 million increase over last year. This is a great accomplishment considering that it comes during a year when most other health programs were cut or received little or no additional funding.

The registry funding was included in the omnibus appropriations bill, which is expected to be signed into law by the President. To date, Congress has provided nearly $5 million to support ALS registry projects that are evaluating the science to guide the creation of a national ALS patient registry. Additional information about the pilot projects is available here .

Congress will reconvene in January to begin the second session of the 110th Congress. In the meantime, we would like to thank ALS Association Chapters and individual advocates for their continued efforts. Together, we are making a difference!

The Advocacy Department wishes you and your family a happy holiday season!

Great job, Lorie. What a true fighter you are! Cindy
Hi Lorie

Hi there, I received this email too and had posted the info back before Christmas. It is a great step foward!I read your posts and see you too have a busy life. Hang in there. We are all in this together. Fondly, Beebe
I live in the UK so I don't know much about this, but if it doesn't come about, maybe we could anonymously post similar information as would be on the registry on this site?

Not having much idea what I'm talking about, maybe this is a stupid suggestion:-D
Thankyou Lorie

Thankyou for fighting on behalf of all of our families! Kelly
Pardon my ignorance but what ia an als registry all about? Does it just keep track of those with als or is there more to it?
Letter from Senator

Hi Lori, Just yesterday I recieved a letter from Senator Jeff Sessions, who you may know is from Alabama. If you will, I would like to share it with you. "Dear Ms. Key: Thank you for contacting me regarding S. 1353, the Amyotrophic Lateral Sclerosis (ALS) Act. I appreciate your taking the time to share your thoughts with me. I am pleased to share that I am a cosponsor of S. 1353. As you may know, this legislation was introduced by Senator Harry Reid of Nevada, on June 30, 2005. It has been referred to the Health, Education, Labor and Pensions (HELP) Committee, of which I am a member. I understand and share your concerns about funding for further research on ALS, and I assure you that I will keep your thoughts in mind. Thank you again for contacting me. Please do not hesitate to contact me or a member of my staff if we can ever be of assistance Very truly yours, Jeff Sessions" Well I am not sure what to think. I am glad he took the time to answer, but how long can stay in committee or on a desk before it dies. I say that and already know it takes forever to get things done in D.C. I must say Thank you Senators Reid and Sessions. WE need to keep our political leaders ears burning. Thanks for your never ending work of love. Fondly sherry
Hey Sherry!

Hey Sherry! Great to hear from you. I am proud of the letter you received. All efforts are grand. I also receive letters from Mr. Sessions. I hender him regularly. Great Guy!
Keep up the good work.

I am now involved with ALSA and MDA. ALSA is moving into the South Alabama area. I have been very persistent. I am going to Volunteer and Fund Raise and do Support as much as possible.

I have been wondering about you, E-Mail me sometimes. You have my E-
Mail address.

You Go Girl!

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