Re: MDA Clinic co-payments/CMT is not MD

[Guest guest]

I wonder if this is connected to the fact that CMT is not MD.

When I was a child it was casually lumped together in conversation at Childrens

Hospital Boston (smart doctors) and the MDA provided great support.

Now that there is more noise about what separates us from MD we are getting less

support ( ie: no afo coverage). I personally don't care about the identity of

CMT if we can remain under the MDA

umbrella we have more money - if we insist on breaking away we lose their money.

________________________________

From: mark farruggia <farruggia1@...>

Sent: Mon, October 25, 2010 4:27:23 PM

Subject: RE: MDA Clinic co-payments

 

Has anyone else come across when you go to the MDA clinics that you have to pay

for your own co-payments now? That MDA block grant they give them  is not

picking our co-payments up anymore.

 Also we are having more taken away from us again in the new year.

Please let me know asap.

Putting together a letter to be sent to National MDA.

More letters that they recieve the more they can do.

Mark Farruggia

farruggia1@...

[Guest guest]

,

I could be wrong but I think MDA decided to no longer hold us under their

umbrella. A side effect of this is the termination of financial support in

various areas. Initially I was a bit troubled by their move but it really comes

down to money. Right now times are tight so they did what they had to do in

order to save their budget. I don't like it.....but as Rock once said, " I

Understand "

Rashid

[Guest guest]

No they stopped it for everyone plus much more

________________________________

From: christine mcguire <zchristinemcguire@...>

Sent: Tue, October 26, 2010 9:28:40 AM

Subject: Re: MDA Clinic co-payments/CMT is not MD

 

I wonder if this is connected to the fact that CMT is not MD.

When I was a child it was casually lumped together in conversation at Childrens

Hospital Boston (smart doctors) and the MDA provided great support.

Now that there is more noise about what separates us from MD we are getting less

support ( ie: no afo coverage). I personally don't care about the identity of

CMT if we can remain under the MDA

umbrella we have more money - if we insist on breaking away we lose their money.

________________________________

From: mark farruggia <farruggia1@...>

Sent: Mon, October 25, 2010 4:27:23 PM

Subject: RE: MDA Clinic co-payments

 

Has anyone else come across when you go to the MDA clinics that you have to pay

for your own co-payments now? That MDA block grant they give them  is not

picking our co-payments up anymore.

 Also we are having more taken away from us again in the new year.

Please let me know asap.

Putting together a letter to be sent to National MDA.

More letters that they recieve the more they can do.

Mark Farruggia

farruggia1@...

[Guest guest]

I believe you are incorrect about this. Why would they summarily dump one

disease?

On Oct 26, 2010, at 1:20 PM, Rashid wrote:

> ,

>

> I could be wrong but I think MDA decided to no longer hold us under their

umbrella. A side effect of this is the termination of financial support in

various areas. Initially I was a bit troubled by their move but it really comes

down to money. Right now times are tight so they did what they had to do in

order to save their budget. I don't like it.....but as Rock once said, " I

Understand "

>

> Rashid

[Guest guest]

They may have modified how they are supporting more than one disease.....

RbQ

[Guest guest]

I have spoken with local and national office of MDA and they said due to lack in

funds the clinics can do what ever they like with the block grant they receive

from MDA. FYI they did this to everyone and not just CMT.

We all need to contact national office of MDA at 1-502-529-2000 and say enough

is enough in taking away from us. DO NOT CALL THE 800 number because it will

only direct it back to your local office.

Tell them that we need our funding restored for things they have taken away.

Please look at there website for what they have taken away in the past 3 years

form the people who use there services.

Mark

 

________________________________

From: <erj66@...>

Sent: Wed, October 27, 2010 12:12:57 PM

Subject: Re: MDA Clinic co-payments/CMT is not MD

 

I believe you are incorrect about this. Why would they summarily dump one

disease?

On Oct 26, 2010, at 1:20 PM, Rashid wrote:

> ,

>

> I could be wrong but I think MDA decided to no longer hold us under their

>umbrella. A side effect of this is the termination of financial support in

>various areas. Initially I was a bit troubled by their move but it really comes

>down to money. Right now times are tight so they did what they had to do in

>order to save their budget. I don't like it.....but as Rock once said, " I

>Understand "

>

> Rashid

[Guest guest]

Hi ,

I too was a patient at Boston Children's & saw Dr. Pappas for years, and I think

a neuro named Dr. Breen.

As an adult, I have found an MDA clinic in New Britain, CT and see a really

great doctor there who is well versed in CMT and the current CMT research

projects. In fact, I was there earlier in the month.

To clarify, CMT is still under the MDA's umbrella. One of the people I talked

with was the MDA patient liasion who works out of the Glastonbury, CT office. I

also saw my neurologist, PT, OT, Breathing Specialist, and maybe somebody

else...I can't remember now.

MDA sent out a letter last year telling patients of the cutbacks necessitated by

the economy. I still have it somehere, I think. If I recall correctly, they

were cutting their staff and closing some of their offices around the country;

consolidating branches. They would no longer pick up the difference on

orthotics or other durable medical equipment (chairs, scooters, etc.).

When I had the genetic testing a few years ago, they picked up the difference on

what my insurance wouldn't pay, but not before Athena billed me to the tune of

$800. I am not sure if they are still covering the genetic testing, but I

certainly hope so.

>

> I wonder if this is connected to the fact that CMT is not MD.

> When I was a child it was casually lumped together in conversation at

Childrens Hospital Boston (smart doctors) and the MDA provided great support.

>

> Now that there is more noise about what separates us from MD we are getting

less support ( ie: no afo coverage). I personally don't care about the identity

of CMT if we can remain under the MDA

> umbrella we have more money - if we insist on breaking away we lose their

money.

>

>

>

>

>

> ________________________________

> From: mark farruggia <farruggia1@...>

>

> Sent: Mon, October 25, 2010 4:27:23 PM

> Subject: RE: MDA Clinic co-payments

>

>  

> Has anyone else come across when you go to the MDA clinics that you have to

pay

> for your own co-payments now? That MDA block grant they give them  is not

> picking our co-payments up anymore.

>  Also we are having more taken away from us again in the new year.

> Please let me know asap.

> Putting together a letter to be sent to National MDA.

> More letters that they recieve the more they can do.

>

> Mark Farruggia

> farruggia1@...

>

>