petition

I don't know how many of you are familiar with the ENFit connector for tube feeding, (and the behind the scenes maneuvering by GEDSA). I cannot even imagine what some of you must go through trying to screw the darned parts of the ENFIT connectors together. I've never used ENFit, and have a...

I hate to bother people with what I am sure is a question that is asked often. However, I have "googled" and used the search function on this forum but I am not having great success with this. I am looking for a web-site (hopefully more concise than Medicare's own site) which will enlighten...

For your information and consideration -- https://www.change.org/p/tell-als-association-improve-home-care-for-als-patients?recruiter=10288373&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=mob-md-no_src-no_msg&fb_ref=Default I'm not familiar with all the rules...

Nancy Frates with Pete Frates and 4 others Hi Everyone - Just returning from ALSA meeting in Tampa. Briefly here is my update: 1. I am overwhelmed to have met all the staff who work in National and all the Chapters around the US. Most of them have been on the horrific ALS journey with a loved...

Following has information regarding GM6 and a communication from Genervon about how ALS advocates can contact the FDA: ALS Advocacy: "The FDA Will Listen To Your Voice If You Choose To Express It"

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.”...

Help accelerate stem cell treatments by signing this White House petition.… See link at bottom Share on Facebook and social media. I believe we also need to start one to have the FDA allow ALS trials to proceed without a placebo arm… There are thousands of placebo arm data points already in...

ALS treat us now has kept its focus on near term treatment access through regulatory negotiation and through partnering with dug companies. We feel we have made great progress in the last three months. From the outside it can be hard to see everything that we're doing. These are delicate...

Dear ALS family and friends, A guy I know lives up in Long Beach CA area is taking this Pramipexole 22.5ml twice a day and he can't talk so good and his wife is his primary caregiver and doesn't have alot of time for fool questions from me... So I was wondering if any of you brainiacs knows...

The skies have been grey most days for days on end. Nightly on the news we have seen entire states under a deluge of rain, flooding homes by the thousand. Our home in the hills is well above the swollen Murray River, but the relentless rain and sheets of grey cloud have created a fitting...