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
Data Information on ALS 
