Re: My return from Vegas Conference Part 2

[Guest guest]

This was our weekend program for the first-ever National Support Leader

Conference (a crash course in cell biology and genetics among other things!) 2

years ago I never thought I'd be at a 300 person CMT conference, and 2 years

later I never thought I'd be in Vegas at a National SGL Conference!

Friday March 5th from 1 to 4 pm was " Meet and Greet " time )a time for presenters

and leaders to know one another) Then conference registration - we all had

badges and twinking star necklaces to wear! After a welcome by

Ouelette, a unique " icebreaker' was facilitated by Ruediger. She used

dried flowers and asked us each to choose one and then share why we made the

choice. We had alot of deep sharing and some great laughs. The ice was

successfully broken!

From 5 to 6 pm Dr. Shy presented on " Support Groups and Investigators - Working

as Partners to Cure CMT " . Of course this included a Q and A.

From 6 to 7 pm O. presented on " Effective Support Groups - sharing the

Workload " .

Then a dinner buffet from 7 to 8 pm which was scrumptious!

Following dinner, Mark Boxshus, New England Support Group Leader spoke about the

CMTA cookbook, gave an update on his thoughts and asked for assistance in

'cooking up' a reality!

The final Friday presenter was Baker, a Public Relations agent with

Gates, Marmon and Drake.

On Saturday March 6, after gathering for breakfast, Pat Dreibelbis presented a

very interesting " History of the CMTA " .

Dr. Shy followed with a presentation on the " STAR initiative and Beyond " , which

included updated research news from HTS screenings. High thoroughput robotic

screening has the capacity to screen 100,000 medications and compounds per day,

of both FDA and non FDA substances. As of March 16 (next week) an initial run

through of 10-15 'hits' will have been completed. The next step will be a 2nd

screening of the FDA approved medications/compounds. He spoke about CMT Type 2

research and of the global collaboration of investigators, with an upcoming

meeting in San Diego Nov. 10-12. (I asked if we could go and he said

'unfortunately no', very apologetically) But I understand completely. He

concluded his presentation by speaking on the future - including RNA research

and genetic engineering.

Following Dr. Shy, were a Feely and Carly, Genetics Counselors from Wayne

State University who spoke clearly on " CMT Genetics " and case scenerios and

answered many of our pre-sent questions. Finally I feel like I have a 'working

knowledge' of CMT genetics!

After lunch we listened to a " Centers of Excellence Physician Panel " which

included Dr. Bird (Seattle), Dr. Iannaccone (Dallas) Dr. Hoke (Baltimore), Dr.

Scherer and Dr. Finkel (Philadelphia) and Dr. Shy from Wayne State. Once these

Centers are up and running, more centers of excellence will be established,

especially in the Western US.

They were a hard act to follow, but my Aquatics presentation was well received.

Considering neither Harrahs or The Imperial Palace did not have their pools

open, I gave a demo on land with a few sample props. A Q and A and

comments/sharing completed the session.

From 2:30 to 3:30, Tannenbaum, a NYC psychologist, spoke to us about

Leading a Great Support Group, concentrating on listening skills, verbal clues,

being a welcoming person, anger issues, and emotional and spiritual healing.

Q & A/Discussion/sharing followed.

After a 1/2 hour break, CMTA Board President Livney presented a " Get

Involved and Fundraising Panel Discussion, followed my CMTA CEO Dave Hall on

" Community Networking " .

After an hour of free time, we reconvened for greetings and and a very special

awards dinner. The food was superb, the camraderie and sense of community highly

energized. It was all very inspiring and enlightening. Then Dave Hall presented

us with a very special challenge for our support groups with Pat Livney agreeing

to offer incentives for the challenge.

I was so fired up and stimulated! I think I slept a total of 6 hours in those 3

days, so yes, I am tired! But the weekend was a huge success and everyone at the

CMTA and beyond connected us all together in unique way. I can only imagine how

tired they are!

I missed breakfast on Sunday, as I had just fallen asleep by 3 a.m. and spent

the time packing to depart for the airport at 11 am.

It was a wonderful experience for me to meet so many new friends, to connect,

network, and share about our groups, as well as meet some of the 'famous'

doctors I had henceforth only known by name. So that's how my weekend went.

I had a few travel oddities with airport security. Driving to the airport, I was

pulled over by highway patrol for not having a current registration sticker.

That was news to me, since I had the paperwork with me and I know I paid the

fees last November and put the 2010 on my car. Come to find out that ripping off

car registration stickers is the latest in identity theft out here. So, I got a

ticket to get a new sticker, then go too my local station to get the ticket

taken off my record. ($18 for a new sticker) lol, I don't even have to be in

Vegas to loose $ !

At the airport, during luggage screening, out came a sealed Fijiwater bottle and

a tube of toothpaste! I was not allowed to take them and somebody has clean

teeth and their thirst quenched! Go figure!

On the return flight, during screening, my award (a lucite Star) was taken out

of it's box and observed. I was about to scream " no no, not that " , when it was

returned to it's box and my luggage! (What a way to get the word out about the

CMTA!)

This is enough for now, I need to go back to sleep. Part 3 will be coming soon

focusing on my spin for Dave's challenge and how everyone at can be part

of in a very simple way. It will be alot of fun.

Hasta luego,

Gretchen

>

>

>

[Guest guest]

What fun? I could have meet you because I founded the orlando support group but

im not longer with them anymore.Me and a physical therapist founded it. Im glad

you had a great time.sorry that someone stealed ur Tag off of ur car.Thats

mean.

>

> This was our weekend program for the first-ever National Support Leader

Conference (a crash course in cell biology and genetics among other things!) 2

years ago I never thought I'd be at a 300 person CMT conference, and 2 years

later I never thought I'd be in Vegas at a National SGL Conference!

>

> Friday March 5th from 1 to 4 pm was " Meet and Greet " time )a time for

presenters and leaders to know one another) Then conference registration - we

all had badges and twinking star necklaces to wear! After a welcome by

Ouelette, a unique " icebreaker' was facilitated by Ruediger. She used

dried flowers and asked us each to choose one and then share why we made the

choice. We had alot of deep sharing and some great laughs. The ice was

successfully broken!

>

> From 5 to 6 pm Dr. Shy presented on " Support Groups and Investigators -

Working as Partners to Cure CMT " . Of course this included a Q and A.

>

> From 6 to 7 pm O. presented on " Effective Support Groups - sharing

the Workload " .

>

> Then a dinner buffet from 7 to 8 pm which was scrumptious!

>

> Following dinner, Mark Boxshus, New England Support Group Leader spoke about

the CMTA cookbook, gave an update on his thoughts and asked for assistance in

'cooking up' a reality!

>

> The final Friday presenter was Baker, a Public Relations agent with

Gates, Marmon and Drake.

>

> On Saturday March 6, after gathering for breakfast, Pat Dreibelbis presented a

very interesting " History of the CMTA " .

>

> Dr. Shy followed with a presentation on the " STAR initiative and Beyond " ,

which included updated research news from HTS screenings. High thoroughput

robotic screening has the capacity to screen 100,000 medications and compounds

per day, of both FDA and non FDA substances. As of March 16 (next week) an

initial run through of 10-15 'hits' will have been completed. The next step will

be a 2nd screening of the FDA approved medications/compounds. He spoke about CMT

Type 2 research and of the global collaboration of investigators, with an

upcoming meeting in San Diego Nov. 10-12. (I asked if we could go and he said

'unfortunately no', very apologetically) But I understand completely. He

concluded his presentation by speaking on the future - including RNA research

and genetic engineering.

>

> Following Dr. Shy, were a Feely and Carly, Genetics Counselors from Wayne

State University who spoke clearly on " CMT Genetics " and case scenerios and

answered many of our pre-sent questions. Finally I feel like I have a 'working

knowledge' of CMT genetics!

>

> After lunch we listened to a " Centers of Excellence Physician Panel " which

included Dr. Bird (Seattle), Dr. Iannaccone (Dallas) Dr. Hoke (Baltimore), Dr.

Scherer and Dr. Finkel (Philadelphia) and Dr. Shy from Wayne State. Once these

Centers are up and running, more centers of excellence will be established,

especially in the Western US.

>

> They were a hard act to follow, but my Aquatics presentation was well

received. Considering neither Harrahs or The Imperial Palace did not have their

pools open, I gave a demo on land with a few sample props. A Q and A and

comments/sharing completed the session.

>

> From 2:30 to 3:30, Tannenbaum, a NYC psychologist, spoke to us about

Leading a Great Support Group, concentrating on listening skills, verbal clues,

being a welcoming person, anger issues, and emotional and spiritual healing.

Q & A/Discussion/sharing followed.

>

> After a 1/2 hour break, CMTA Board President Livney presented a " Get

Involved and Fundraising Panel Discussion, followed my CMTA CEO Dave Hall on

" Community Networking " .

>

> After an hour of free time, we reconvened for greetings and and a very special

awards dinner. The food was superb, the camraderie and sense of community highly

energized. It was all very inspiring and enlightening. Then Dave Hall presented

us with a very special challenge for our support groups with Pat Livney agreeing

to offer incentives for the challenge.

>

> I was so fired up and stimulated! I think I slept a total of 6 hours in those

3 days, so yes, I am tired! But the weekend was a huge success and everyone at

the CMTA and beyond connected us all together in unique way. I can only imagine

how tired they are!

>

> I missed breakfast on Sunday, as I had just fallen asleep by 3 a.m. and spent

the time packing to depart for the airport at 11 am.

>

> It was a wonderful experience for me to meet so many new friends, to connect,

network, and share about our groups, as well as meet some of the 'famous'

doctors I had henceforth only known by name. So that's how my weekend went.

>

> I had a few travel oddities with airport security. Driving to the airport, I

was pulled over by highway patrol for not having a current registration sticker.

That was news to me, since I had the paperwork with me and I know I paid the

fees last November and put the 2010 on my car. Come to find out that ripping off

car registration stickers is the latest in identity theft out here. So, I got a

ticket to get a new sticker, then go too my local station to get the ticket

taken off my record. ($18 for a new sticker) lol, I don't even have to be in

Vegas to loose $ !

>

> At the airport, during luggage screening, out came a sealed Fijiwater bottle

and a tube of toothpaste! I was not allowed to take them and somebody has clean

teeth and their thirst quenched! Go figure!

>

> On the return flight, during screening, my award (a lucite Star) was taken out

of it's box and observed. I was about to scream " no no, not that " , when it was

returned to it's box and my luggage! (What a way to get the word out about the

CMTA!)

>

> This is enough for now, I need to go back to sleep. Part 3 will be coming soon

focusing on my spin for Dave's challenge and how everyone at can be part

of in a very simple way. It will be alot of fun.

>

> Hasta luego,

>

> Gretchen

>

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