CMT is NOT MD

September 1, 2010

Lori, hi,

To clarify, Charcot Marie Tooth disease IS but one of many types of

neuromuscular disorders. But it is NOT the same as Muscular Dystropy, Multiple

Sclerosis, ALS, etc.

For many years, the Muscular Dystrophy Association has 'housed' about 40

neuromuscular disorders under their wing. Some people with CMT go to MDA clinics

for medical care, because those Drs. may be more knowledgeable. MDA also used to

provide AFOs for people with CMT, but no longer.

Yes, Abbey Umali, the little girl with CMT, is once again the MDA Ambassador for

the telethon. The MDA has done research on CMT and still does.

In explaining CMT, I have a standard line: Charcot Marie Tooth syndrome is a

neuromuscular disorder characterized by peripheral neuropathy (feet and hands) I

go on from there, depending on how much time I've got. lol

As for National CMT Awareness Week, that is seperate from the MDA telethon and

is a venture from the Charcot Marie Tooth Association. Like I said in a previous

post, is also contributing effort to spread CMT Awareness during that

special week.

Both the MDA and the CMTA raise funds for research.

does NOT raise funds. (although people have wanted to donate!)

I hope that clarifies things a bit.

Gretchen

September 2, 2010

Gretchen,

Thanks for the info, and for all you do!

I usually tell people that CMT is a degenerative neuromuscular disease that

affects the extremities. In my case it is hereditary and affects my balance and

hand strength and is starting to affect the way I walk, as well as my endurance

and ability to stand in one place for long.

Along with several other neuromuscular diseases, it falls under the umbrella of

the MDA for some research and treatment purposes, but it is not a form of MD.

If their eyes aren't glazed over and I have the time, I might go further from

there. lol

September 4, 2010

,

Thanks for writing. You know it. I have put this on FB and a few other places.

As we speak to people about CMT, especially with the MDA visibility in different

parts of the country this weekend, we need to be very clear. ~ Gretchen

I Feel a need for clarification on what CMT disease and what it's NOT. CMT is a

an inherited degenerative neuromuscular disorder that affects the extremities.

It affects balance, hand strength, as well as physical endurance and and ability

to stand in one place for long times. The myelin around the nerve becomes

frayed, thus nerve function to muscles is slowed, creating atrophy. The nerve

cell interior can is also affected. This weekend you may hear about CMT through

the MDA telethon because along with several other neuromuscular diseases, it

falls under the umbrella of the MDA for some research and treatment purposes but

it is NOT a form of MD. Nor does it have autoimmune properties such as MS.

September 5, 2010

I do agree that MD are the only ones who seem to be supporting people with CMT.

Also they are also suporting us in many ways. So please do not complain be

happy that we are getiing suppport from them.

Barb C

September 5, 2010

,

There are many people with a CMT diagnosis that 1) are told or 'assume' they

have MD or a 'form' of MD that is called CMT 2) When their stories are picked up

by the media, this myth is communicated. This is my experience, not only with

the media, but also hearing this from people who have CMT and believe it to be

MD. Sign up for Google Alerts and watch how many stories come out mentioning CMT

as a 'form of MD', 'like MD' or someone has 'a rare form of MD called CMT'.

During my tenure with I have seen this more times that not. And before

, this 'myth' was still floating around. Before the Internet was around I

had several 'pen pals' with CMT who in fact believed CMT is a 'form' of MD.

Everyone (general public) is aware that for over 40 years MDA has helped

patients and their families with services, equipment, camp and medical clinics.

The statement " that it is one of the most common forms " is of MD " is not the

Truth. CMT is but one of the neuromuscular disorders that falls under the

umbrella of MD. Although, many people with CMT use the services of MDA for

their CMT needs.

It is NOT a question of 'symantics' as you refer to. In awareness, it is a MUST

to know what CMT IS and what CMT isn't. If I go to Corp X. Board Members and ask

for a grant donation for CMT saying 'it is a form of CMT like MD', a Board

member may say 'why should we fund CMT, the MDA covers that'. Thus, no direct

funding from the Corp. Of course I am grateful to the MDA for what their doing

in terms of research and help for people with CMT.

**** CMTA's STAR is so special because this is the first time in the history of

CMT organizations that an organization OUTSIDE of the MDA has taken a major

leadership role, specific to CMT research and has such promising results for.

This is what I am communicating for Awareness because it is Truth. ******

Finding treatment and eventually arrestment for a disease that has been in the

human family for 6-7 million years is a HUGE responsibility that we all share

in, as well as all organizations, labs, and medical centers, researchers, etc.

Gretchen

> >

September 5, 2010

Well said . I find that the subtle difference in wording between 'falling

under the MDA umbrella' vs 'a form of MD' and 'atrophy' vs 'dystrophy' is very

easily lost on people. I have explained the difference to my close friends and

family, but later I found there was still some confusion when they tried to

recall what I said and they weren't sure how to support the disease. That's

definitely not a good strategy for the general population.

I find it's easier for people to remember CMT and financially support it if we

DO let them associate CMT with MD. If we correct them, this may lead to

inactivity later. They may be less likely to talk about it and financially

support it if there's the least bit of confusion in their minds. That's not

good.

Earlier this week, my local news did a story on Abbey, the national goodwill

ambassador for MDA again this year. In the piece, they didn't mention

her CMT. They just said she had a neurological disorder. I wish there was at

least a mention of CMT in these stories, so awareness could be raised. I really

don't care if the media calls it an atrophy or dystrophy or refers to it as a

form of MD. I'm just happy if the name CMT is used at all. If an agency does a

story on CMT and uses the name, we should thank them, so they are encouraged to

do similiar stories in the future. If we correct them for subtle inaccuracies

in their story, they may not do another story on the subject. Again, not good.

Like the old saying goes - any publicity is good publicity.

September 5, 2010

These groups provide info and fund research, but MDA is the only Org I know of

that provides direct patient support (paid clinics, braces, etc) depending on

your locality.

I sent donations given in memory of my mother to the local office of MDA that

helped here because the national funds locals, by by sending direct the local

gets the whole donation.

>

September 5, 2010

Hi Gretchen - I definitely agree with you that accuracy is important with the

medical community and it's also helpful for patients to understand their own

disease. I should have clarified that my post related to the general -

non-medical - public, where, in my experience, the details are not readily

understood. The work you do to raise awareness and promote truth is much

appreciated.

> >

September 6, 2010

Gretchen –

I must say that I am so disappointed by your reaction to my post. I can

completely understand the need to make a distinction between the MDA and the

CMTA STAR when it comes to fundraising. Whether you like it or not, CMT is one

of the diseases that falls under the umbrella of the MDA. That's all my last

post said. You even reiterated that. You are indeed hung up on the semantics of

it all. When I say that, I mean that you seem to be very distressed by the fact

that folks can't seem to separate CMT from MD. Folks with ALS, Beckers's

Dystrophy, Pompeii Disease, etc. all interact the same way with the MDA. There

is no mistruth in that. Neither is there for CMT. They all fall under the

umbrella. It's a big and welcoming umbrella.

The MDA has been so important to my family as we learned about 's CMT.

They helped to provide us with equipment, support, the clinic and summer camp

which afforded him the phenomenal experience of being a kid without boundaries

for a week.

CMTA is a wonderful organization and I am proud to serve as a co-facilitator of

a support group and to further the activities planned for Awareness Week. How

exciting it is that we are making a concerted effort to make America aware of

CMT. My service to CMTA is in no way diminished by my work for the MDA. I want

someone to find a cure in 's life time. I will work to that end with both

organizations.

Gretchen, there are many folks in this world who do not have the capacity to

understand the subtle difference being made. They hear that nerves don't work

properly and muscles get weaker and they leap to MD. We can talk until we are

blue in the face and some will still walk away saying that CMT is MD. In order

to move forward, there are some things you have to just accept and get past. I

know there is a difference and so do you and many, many others. For those that

don't we can keep moving to educate them, but don't stress out so – it all comes

together in the end.

Our local MDA is now referring CMT patients to our CMTA Support Group. We work

side by side for one thing…to promote awareness and raise funds for research. I

am devoted to both causes – for indeed they really are one in the same – finding

a cure.

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> There are many people with a CMT diagnosis that 1) are told or 'assume' they