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caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
Hello Everyone,

Just thought I would share with you data info, which is available to all PALS.

Click on: www.alsa.org

*New Scientific American Report on ALS

*Possible ALS Drug Granted Orphan Status by the FDA


Also, PALS and families of ALS can obtain free tapes, literature from the ALS Association by request. This is invaluable helpful information for those with this devastating disease. You can phone 818 880-9007 or email them at the above intersite site requesting tapes, books or whatever you need. We ordered all five tapes, which helped us so much to better understand this journey of ALS. All is completely free.


Also, on the Advocacy Action Center of the above website, please remember to only contact the Senators if you are a constituent living in their state on the ALS Registry Act.

For a number of reasons, ALS has proven particularly difficult for scientists and doctors to make progress upon. Therefore, the ALS Registry Act will do something further to help arm our nation's researchers and clinicians with the tools and informat6ion they need to make progress in the fight against ALS. The data made available by a registry will potentially allow scientists to identify causes of the disease, and maybe even lead to the discovery of new treatment, a cure for ALS, or even a way to prevent the disease in the first place. This is my sincere desire.

Unfortunately, despite the nearly unanimous support of the House of Representatives, the unanimous committee vote and the overwhelming support of the 67 cosponsors, this bill remains unpassed.

Please continue to reach out to your Senators, Together, we can make a difference!

Hugs & Prayers,

Caroliney
 

brookgolf

Member
Joined
Jun 8, 2008
Messages
26
Reason
PALS
Diagnosis
04/2008
Country
US
State
ny
City
Saratoga
Thanks for the information!
 
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