Originally Posted by sorrentome

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.