Re: My return from Vegas Conference Part 1

[Guest guest]

Gretchen,

Thanks for your update and your kindness in sharing new information with us. I

am sure that you are exhausted after 3 days of non-stop actions. I am not sure

if this is possible, but is there any way that you could share with us this

question, is there any breakthrough in CMT research that could lead to a

possible treatment within the near future?

Stay well,

Minh Vo

________________________________

From: gfijig <gfijig@...>

Sent: Tue, March 9, 2010 1:02:12 AM

Subject: My return from Vegas Conference Part 1

Hello to all,

I returned home last night from the three day CMT SGL Conference in Vegas. It

was fanatstic, with so much new information presented, plus much time to

interact with the speakers, each other and get 'infused' with ideas. I will post

more about what happened in Vegas (yes, all of it will not stay in Vegas this

time!)

Let me say to all who told me not to 'loose my shirt', I didn't. And to those

who told me to 'win big', I didn't. We had very little free time, this

Conference was like a CMT IV line, nor was there any real 'down time', although

I managed to squeeze in 2 quickies (!) a shoulder and neck massage, and a

seperate foot and reflexology massage. Believe me, I needed it after the

intensity of the conference. I also discovered a Crabtree and Boutique at

the airport which is where all my money went, lol soaps, lotions, perfumery, oh

my!

For anyone who went to the Conference in Palo Alto 2 years ago, just think

information, ideas, ideas and socialization X 3. I'm now trying to 'debrief'

myself, unpack, sort through the material (read here a 3 inch thick binder of

info) and sleep.

You'll be hearing from me more when I get things more together. Thanks to Rick,

my jewel, who was moderator while I was gone. I'll go through any posts made in

my absense shortly. I will also be checking my emails shortly if anyone sent me

one, and will answer just as soon as I regain my brain.

Gretchen

[Guest guest]

Dear Gretchen,

Thank you very much.

On Tue, Mar 9, 2010 at 2:02 AM, gfijig <gfijig@...> wrote:

>

>

> Hello to all,

>

> I returned home last night from the three day CMT SGL Conference in Vegas.

> It was fanatstic, with so much new information presented, plus much time to

> interact with the speakers, each other and get 'infused' with ideas. I will

> post more about what happened in Vegas (yes, all of it will not stay in

> Vegas this time!)

>

> Let me say to all who told me not to 'loose my shirt', I didn't. And to

> those who told me to 'win big', I didn't. We had very little free time, this

> Conference was like a CMT IV line, nor was there any real 'down time',

> although I managed to squeeze in 2 quickies (!) a shoulder and neck massage,

> and a seperate foot and reflexology massage. Believe me, I needed it after

> the intensity of the conference. I also discovered a Crabtree and

> Boutique at the airport which is where all my money went, lol soaps,

> lotions, perfumery, oh my!

>

> For anyone who went to the Conference in Palo Alto 2 years ago, just think

> information, ideas, ideas and socialization X 3. I'm now trying to 'debrief'

> myself, unpack, sort through the material (read here a 3 inch thick binder

> of info) and sleep.

>

> You'll be hearing from me more when I get things more together. Thanks to

> Rick, my jewel, who was moderator while I was gone. I'll go through any

> posts made in my absense shortly. I will also be checking my emails shortly

> if anyone sent me one, and will answer just as soon as I regain my brain.

>

> Gretchen

>

>

>

[Guest guest]

Thats awesome Gretchen that you could go and be a part of it.What did you learn

there.How many people showed up?

Thanks,

>

> Gretchen,

>

> Thanks for your update and your kindness in sharing new information with us. I

am sure that you are exhausted after 3 days of non-stop actions. I am not sure

if this is possible, but is there any way that you could share with us this

question, is there any breakthrough in CMT research that could lead to a

possible treatment within the near future?

>

> Stay well,

>

> Minh Vo

>

>

>

>

> ________________________________

> From: gfijig <gfijig@...>

>

> Sent: Tue, March 9, 2010 1:02:12 AM

> Subject: My return from Vegas Conference Part 1

>

>

> Hello to all,

>

> I returned home last night from the three day CMT SGL Conference in Vegas. It

was fanatstic, with so much new information presented, plus much time to

interact with the speakers, each other and get 'infused' with ideas. I will post

more about what happened in Vegas (yes, all of it will not stay in Vegas this

time!)

>

> Let me say to all who told me not to 'loose my shirt', I didn't. And to those

who told me to 'win big', I didn't. We had very little free time, this

Conference was like a CMT IV line, nor was there any real 'down time', although

I managed to squeeze in 2 quickies (!) a shoulder and neck massage, and a

seperate foot and reflexology massage. Believe me, I needed it after the

intensity of the conference. I also discovered a Crabtree and Boutique at

the airport which is where all my money went, lol soaps, lotions, perfumery, oh

my!

>

> For anyone who went to the Conference in Palo Alto 2 years ago, just think

information, ideas, ideas and socialization X 3. I'm now trying to 'debrief'

myself, unpack, sort through the material (read here a 3 inch thick binder of

info) and sleep.

>

> You'll be hearing from me more when I get things more together. Thanks to

Rick, my jewel, who was moderator while I was gone. I'll go through any posts

made in my absense shortly. I will also be checking my emails shortly if anyone

sent me one, and will answer just as soon as I regain my brain.

>

> Gretchen

>

>

>

>

>

>

>

>

[Guest guest]

,

There were about 70 of us I think, plus all the speakers and Board members. What

I learned there is how to be a better Support Group Leader, and besides cell

biology and genetics, I also learned from what others SGLs were doing in their

groups. I also learned that it is very difficult to give an Aquatic exercise

demonstration on land!

Gretchen

>

> Thats awesome Gretchen that you could go and be a part of it.What did you

learn there.How many people showed up?

>

> Thanks,

>

>

>

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Ming,

As for " breakthroughs " in research, we saw a power point presention (by Dr. Shy)

on HTS which promises treatment for CMT 1A in 5 years. The more substances that

are screened, the more breakthroughs will result. As I mentioned before

thousands of substances can go through HTS. The CMTA and their STAR intiative

are continuing to raise funds. No other organization (like MDA) is a partner. I

asked Dr. Shy when we would hear about the results of the Vitamin C trials, and

he said most likely June 2011.

There may be more unpublished research news presented at AAN (American Academy

of Neurology) in April.

Gretchen

>