advocacy

In the 'prep for the hill' session, there are a few action items we all can do. Link below, but register if you haven't and go to virtual advocacy and send the letter! Also, please pass along :-) Ohttp://capwiz.com/alsa/home

I am wondering if any one on the forum is going to be in Wash. DC for the National ALS Advocacy Day in May. I was asked to attend and I would like to meet anyone on the forum if you are going to be there. Rick

An ALS advocate stumbled across something earlier this week that has several of us concerned. Effective April 1, 2014, the Medicare CMS rules for Speech Generating Devices (SGDs) are changing. They are being classified as durable medical equipment that will fall under a “capped rental rule.”...

i have not seen any mention of the conference on this site but i could have easily missed it. it is may 8-11 in wdc. went last year and look forward to the trip again this year. anyone else going, if so will be in bright yellow t-shirt

We will have a complimentary Exhibit Table. "The ALS Association is pleased to extend the opportunity for ALSTUN to participate in The 2013 ALS Association Advocacy Day & Public Policy Conference Exhibitor’s Foyer. This year’s single-day, Exhibitor’s Foyer Program will be presented Friday, May...

"Praying only is not going to solve the ALS problem. We need to make ourselves heard by the Pharmaceutical industry, the Government, etc., or we are never going to see an effective treatment for this disease, even when not for us, but for the new generations of PALS who are being diagnosed...

Pfizer cancer drug wins special status; shares jump time for Us to get serious about replacing the word cancer with ALS. We have many Levers To pull. We just Need Choose a treatment, select the levers, And recruit people willing to pull them. the last one is simple and Potentially exceedingly...

Fellow ALS Patient, Below is a link to a survey designed to quickly capture ALS patient's feelings on risk regarding their participation in clinical trials before the FDA ALS PUBLIC HEARING on 25 FEB 2013. This survey was initiated by ALSTUN: "ALSTUN has been unable to find any references to an...

The love of my life Andrew Ragan at the sweet age of 45 passed peacefully from this brutal disease on May 20th. Our sweet boys are trying to make sense of the last six years. All though I have been absent from the forum ...I am always close in heart. i promise...I will carry on ALS advocacy with...

Cynthia from ALSA corporate just called in response to email sent last night, said Jane is offering a free table in the ALSA hotel market place to ALS-Treat Us Now. If you are attending the ALSA Advocacy meeting May 13,14, and have 2 hours for helping us, please contact Sharon/Sequoia... Have...