I Need Your Help !!
AnonymousMarch 20, 2009 at 9:31 pm
I am in need of letter writers–
please read the latest on my blog:
if i could ask you to email or fax to the people stated in objection of their denial, i would very much appreciate it. contact information is on the top of my blog (email and fax numbers for your ease)
also, where appropriate, please pass along this email to people in your address book. the more and faster we can flood them with emails and faxes, the better.
AnonymousMarch 21, 2009 at 12:30 am
Have you gone to shows like Oprah? 20/20? etc.
Send them your story in hopes of getting help.
Keep sending your story out to everyone you can think of. newspapers, magazines.
The more people that are aware of our condition CIDP the better chances treatments will be made more avalable to all of us.
AnonymousMarch 21, 2009 at 10:31 am
i have sent 3 letters to oprah–
and many others: news stations, newspapers, politicians, etc! what i need right now is for people to flood their emails and fax machine over the weekend so that they will hopefully overwhelm the powers to be on monday morning.
please, take a moment to write something– its all email or fax so its easy to do– just see my blog for updated info.
AnonymousMarch 21, 2009 at 10:52 am
Just wondering if you’ve tried to get into any trials or contacted the hospital to see if they will treat you for free? Many times hospitals will offer free or low cost services.
Also your old neurologist may see you free of charge (or at low cost) if he knows your circumstances. I don’t remember what your outcome with IVIG was but your dr may be able to contact the drug manufacturer & ask them to basically give you IVIG for free. There are programs out there to help people who are in your situation.
I hate to be a Debbie Downer but just in case you can’t get this decision reversed you need to have a back up plan. I’m a fan of back up plans, LOL.
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