Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 03-20-2013, 11:54 AM #16
sorrentome sorrentome is offline
Junior Member
 
Join Date: Jul 2012
Posts: 7
10 yr Member
sorrentome sorrentome is offline
Junior Member
 
Join Date: Jul 2012
Posts: 7
10 yr Member
Default

I too called Sanofi last week (on or about 3/14/2013) and was informed they would not be taking steps to bring Mytelase into the US.

I then called the MG Foundation of America to again ask why they were taking no action to help in this matter-I got no response. So I then pulled up the Foundation's Federal Tax Form 990 (this is available to anyone on the internet) and it became pretty evident why there is no help from them. The MG Foundation farms all their operations out to a management firm-Kellen & Co.- and seems to have no permanent employees. It would appear that Kellen & Co. has no intrinsic interest in the MG community other than collecting their management fee. Certainly their actions-or lack thereof-would tend to support this conclusion.
A further inspection of the Form 990 (for the year 2011, the last year available) showed some interesting facts concerning the yearly MG National Walkathon Fundraising drive. In 2011 $418,000 was raised. Expenses related to the Walk were $276,000 of which $217,000 was paid to the EW Group for running the event, leaving $142,000 to benefit the MG community-or pay Kellen & Co's management fee. In other words for every $1 raised 34 cents went to the MG Foundation and 66 cents went for expenses. A pretty good deal for somebody-you figure out who.

Basically, we have no advocates in this fight

I am going to speak to the MG Chapter to which I belong to urge them to take a closer look at the National Foundation and their activities.
sorrentome is offline   Reply With QuoteReply With Quote
 

Tags
mytelase


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Morton Epsom lotion and CVS Epsom lotion discontinued! mrsD Peripheral Neuropathy 36 01-16-2016 10:06 AM
Mytelase Chloride (ambenonium) scrubbs Myasthenia Gravis 14 12-24-2012 02:28 AM
Discontinued from my pain management Dr Swatgen27 Reflex Sympathetic Dystrophy (RSD and CRPS) 5 05-15-2011 05:16 PM
oxycontin discontinued rsdpoppa New Member Introductions 2 02-22-2011 02:04 AM
CDB323 trial discontinued Riverwild Multiple Sclerosis 1 06-30-2009 06:12 PM


All times are GMT -5. The time now is 02:05 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.