Merrill Goozner site: Gooznews.com


http://www.gooznews.com/

http://www.gooznews.com/articles/

paula

A Iplex Availability Advocacy Group is currently bing formed to pursue all avenues to make Iplex available to those who so badly need it it.

If you are interested in this group, contact me at my email address.

Norske

Jean,

I just emailed them too.

I'll spread the word through the grass-roots organizations such as Care2 Petition Site by starting a petition.

www.thepetitionsite.com

If Jean doesn't mind, I'll copy her letter because it suits the purpose greatly.

John

Dear John,

Thank you!

You're welcome! I've uploaded the petition. Hopefully this will get something going in the right direction. While we're at this, does anyone have any information on Amgen? We could hit them with a petition about the GDNF.


Edit:

Here's the link to the petition. So far 6 people (5 other people besides me) have signed it.

http://www.thepetitionsite.com/petition/127840940


John

OMG, John, to me this is like meeting someone who doesn't know who fought in WWII, showing my longevity I guess. Glad you asked!! Please read this thread:
http://neurotalk.psychcentral.com/thread51550.html
and note that Carolyn has provided a link to the history. Several people on this forum participated in a massive national effort to get Amgen to listen. The thread I cited is about the book reporting the whole struggle, definitely a must-read for anyone with PD or cares.

Jaye

next time,the med witheld may be something we need or someone near and dear to us needs. I should point out that I NEVER sign stuff like this, so that shows how important I think this is. Hopefully the friends I listed will agree (and not hate me for giving out their email, gulp, gulp...)

I've received some feedback from one of the petition singers. It appears that this is peitition is making its rounds in the ALS community! I recevied an email response from some one, and then she responded back. Here's her response below. She wants me to join their email group. In addition, I'm going to post a link to the petition over in the ALS forum here on Neurotalk.

Re: Petition feedback on Allow IPLEX to be distributed to ALS patients and burn victims. Big pharma protects profits instead.


john - thanks so much for your email.

there is an IPLEX advocacy group forming. right now it's made up of people with ALS (pals) and caregivers of people with ALS (cals). your petition has gotten quite a bit of attention. would you be interested in joining our email group? there will be a few questions for you, i'm sure.

and please accept my sincerest appreciation for initiating this petition.
~ beth

John