alsa

This is a copy of the email that I received on 8 October 2009. Please if you have the energy, CONTACT your members of Congress and your state politicians! WE STILL NEED FUNDING for the REGISTRY! My name is Jeff Faull and I am the married father of two beautiful daughters. I was...

I copied and pasted this from my email from ALSA Advocacy! Woo Hoo! Today, October 8, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) is launching the National ALS Registry website. This is the first phase of building a website...

A Randomized Clinical Trial of Lithium Carbonate with Riluzole Versus Placebo with Riluzole in ALS Shows No Benefit In February 2008, Dr. Francesco Fornai and colleagues at the University of Pisa, Italy, reported in a pilot study that lithium carbonate at dosages of 300-450 mg daily (titrated...

Ok, I have a few weeks to compile this list - but I am anxious. Jim was referred to an ALS neurologtist at the Cleveland Clinic's ALS Center. What should I be prepared to ask. The ALSA representative I talked to could not believe they hadn't taken a more active approac h to his care. I did...

Please go to this link Public Policy - The ALS Association and send the email to support this Bill. I have also posted the link on my facebook page and requested that Family and Friends become Advocates and send it on to their contacts. It has more impact if you add something personal-"My...

Just a loooong update (and a chance for me to unload a bit) ... Had my three-month clinic visit last week, and my FVC is 41%. A year ago, when I was diagnosed, it was 78%. So, clearly at this rate of progression, I'm going to need to check out hospice care PDQ. My ALSA rep said she thought my...

Words like “inspiring” get used so casually that their meaning loses power. But in the case of Ace Noface, and his new album, Toxic Charm, one immediately becomes present to the true meaning of words like inspiration and courage. The musician, living with a terminal illness, is facing his fate...

Does anyone know if this is showing any promise? Here is an article off of the ALS website. If the FDA approved it, it has to have some benefit, correct? http://web.alsa.org/site/PageServer?pagename=AdvocacyArchive_031009

I dont know whether it is possible for anyone to find a copy on the internet, of a programme shown on UK BBC tv last night May 18th Panorama With the title Stem Cells and Miracles. It was predominantly about a child who is blind and a lady with MS. The clinics they visited were in China and...

My husband Jay passed away on Saturday, November 22, 2008, nine months after his diagnosis. It was very peaceful and our son and our CNA were with us. Our daughter had spent the day with us with the babies and she got to say goodbye to her father. It was a very difficult time and Jay did not...