Re: Updates from The National CMT Resource Center

[Guest guest]

This is great! We would love to participate in any way we can...

Lori

Stay tuned for more updates about the National CMT Resource Center!

[Guest guest]

Focus Groups? Are you kidding me? We are way past that. I've found all the

resources I and my family need right here at . My daughter was able to put

together several grants from the Education links that has funded her pre-med

studies.

In short, from my experience and perspective, for God's sake, keep it simple,

and keep it out of the government.

In my experience, I feel people with CMT need:

Financial help for medications, braces, housing modifications, access to

adaptive equipment, knowledge of rights by the ADA, general financial planning

for future needs

Jobs they can do at home and training to do those jobs

Health insurance

Listing of orthotists NEARBY

Treatment for symptoms that does not effect cognitive function

Arresting the disease once and for all

Lower/or NO fees for genetic testing and more testing centers, home testing kits

Genetic counseling and understanding the history and transmission of the disease

To be listened to

Weight loss and exercise programs

Smoking cessation, alcohol and medication abuse programs

To know the truth about CMT, including phrenic nerve and heart muscle

involvement

To meet others with CMT at inspiring, enlightening low-cost conferences. (I

think Gretchen has something planned here)

I know there must be more, such as better understanding of children's needs,

IEPs, 504s, OHI and all kinds of disability issues. And more and more.

Bring private capital into these needs, get out of government dependence.

What are YOUR specific needs?

Ben

>

[Guest guest]

Great list Ben! I'm in agreement all the way. I'd add Architectural Improvement

to homes (for scooter or wheelchair access)and funding for that. As for the

private funding, Pharnext seems to be going great on that.

See you next week. Talk more then.

Gretchen

>

> Focus Groups? Are you kidding me? We are way past that. I've found all the

resources I and my family need right here at . My daughter was able to put

together several grants from the Education links that has funded her pre-med

studies.

>

> In short, from my experience and perspective, for God's sake, keep it simple,

and keep it out of the government.

>

> In my experience, I feel people with CMT need:

>

> Financial help for medications, braces, housing modifications, access to

adaptive equipment, knowledge of rights by the ADA, general financial planning

for future needs

>

> Jobs they can do at home and training to do those jobs

>

> Health insurance

>

> Listing of orthotists NEARBY

>

> Treatment for symptoms that does not effect cognitive function

>

> Arresting the disease once and for all

>

> Lower/or NO fees for genetic testing and more testing centers, home testing

kits

>

> Genetic counseling and understanding the history and transmission of the

disease

>

> To be listened to

>

> Weight loss and exercise programs

>

> Smoking cessation, alcohol and medication abuse programs

>

> To know the truth about CMT, including phrenic nerve and heart muscle

involvement

>

> To meet others with CMT at inspiring, enlightening low-cost conferences. (I

think Gretchen has something planned here)

>

> I know there must be more, such as better understanding of children's needs,

IEPs, 504s, OHI and all kinds of disability issues. And more and more.

>

> Bring private capital into these needs, get out of government dependence.

>

> What are YOUR specific needs?

>

>

> Ben

>

>

>

>

>

> >

[Guest guest]

Yes, this is a very good list.

I see on there a reference to CMT and heart function, but I am having little

luck finding anything about this.

My father suffers from atrial fibrillation, and I wonder what if anything I need

to look out for?

I have CMT X, so I know my mutation did not come from my father.

Can someone point me to info in CMT and heard dysfunction?

I looked in the files here and did not see anything, but that doesn't mean it's

not there.

thanks,

On Dec 6, 2010, at 10:56 AM, gfijig wrote:

> Great list Ben! I'm in agreement all the way. I'd add Architectural

Improvement to homes (for scooter or wheelchair access)and funding for that. As

for the private funding, Pharnext seems to be going great on that.

>

> See you next week. Talk more then.

>

> Gretchen

>

>

> >

> > Focus Groups? Are you kidding me? We are way past that. I've found all the

resources I and my family need right here at . My daughter was able to put

together several grants from the Education links that has funded her pre-med

studies.

> >

> > In short, from my experience and perspective, for God's sake, keep it

simple, and keep it out of the government.

> >

> > In my experience, I feel people with CMT need:

> >

> > Financial help for medications, braces, housing modifications, access to

adaptive equipment, knowledge of rights by the ADA, general financial planning

for future needs

> >

> > Jobs they can do at home and training to do those jobs

> >

> > Health insurance

> >

> > Listing of orthotists NEARBY

> >

> > Treatment for symptoms that does not effect cognitive function

> >

> > Arresting the disease once and for all

> >

> > Lower/or NO fees for genetic testing and more testing centers, home testing

kits

> >

> > Genetic counseling and understanding the history and transmission of the

disease

> >

> > To be listened to

> >

> > Weight loss and exercise programs

> >

> > Smoking cessation, alcohol and medication abuse programs

> >

> > To know the truth about CMT, including phrenic nerve and heart muscle

involvement

> >

> > To meet others with CMT at inspiring, enlightening low-cost conferences. (I

think Gretchen has something planned here)

> >

> > I know there must be more, such as better understanding of children's needs,

IEPs, 504s, OHI and all kinds of disability issues. And more and more.

> >

> > Bring private capital into these needs, get out of government dependence.

> >

> > What are YOUR specific needs?

> >

> >

> > Ben

> >

> >

> >

> >

> >

> > >