Hi - and Proposition 303 in AZ

[kenschatz]

Have not posted here previously, although I have been trolling. I was diagnosed with ALS officially on July 14th of this year. So......Hello.

It seems to me to be slow moving, I'm not taking any drugs at this time, although I'm using copious amounts of amino acids - L -Serene, coconut oil (eating and massaging) Deanna Protocol, and anything else I can find.

I'm affected mostly on my left side, foot drop (using an APO) and I can still type fairly well, although the fingers on my left side are not working properly (good bye chopsticks).

A new "right to try law" has recently passed here, and it seems as though I should be able to ask , and pay for myself apparently, some of the new trial drugs such as Gerveron (sp), or possibly stem cell -

Any thoughts?

Don't flame me for starting a thread that might be inappropriate please

thanks

 

[kenschatz]

Here's the link to Prop 303

2014 What's on My Ballot? Arizona's General Election Guide (Ballot Propositions & Judicial Performance Review)

 

[dalvin]

Only thing I will say is to be careful if your paying yourself. Most of these drugs are outrageous without insurance

 

[vzandt]

Welcome to our forums.

 

[Graybeard]

Welcome to Heartbreak Hotel.

That is interesting. Please keep us informed.

 

[Music67]

I asked about Genervon at a Seattle hospital recently and it didn't sound like it is available for even a compassionate usage at this time. Hope you have better luck.

 

[Music67]

Kenschatz - I asked about Genervon at a Seattle hospital recently and it doesn't sound like it is available for even a compassionate usage at this time. It hasn't been handed off to the FDA yet. (See my postings in the above thread on GM604 news) Hope you have better luck with your new law.

 

[kenschatz]

Music67,
I'm checking out specifically what the Prop really means to folks like us. I'll keep the Forum informed.

 

[Nikki J]

Possibly of interest
The ALS Association / NEALS PALS Webinar:

Expanded Access Webinar
Thursday, December 18, 2014

2:00PM - 3:00PM ET

Jess Rabourn, CFA and

Richard Bedlack, MD, PhD




Outside of traditional clinical trials, expanded access is the only legal channel for physicians and their patients to explore unapproved medicine. This webinar will explain the regulations and history of FDA-authorized expanded access and review some common misconceptions on the topic. The presenters will discuss the opportunity for large scale, centrally coordinated expanded access programs in ALS.




Please join us for this very informative session.

This email may be forwarded to anyone who might be interested.




Registration Instructions


Space is limited - reserve your Webinar seat today by clicking the link below:



https://www1.gotomeeting.com/register/712514577

 

[kenschatz]

Thanks Nikki - just signed up for it. Appreciate it.