Re: ta - da! We did it!

[Guest guest]

Kathi, Seeeeeee everything went well even with the mascara trip, don't blame

you I don't have any eyes without it either, LOL..........women, we're so

vain!! Sounds like you and had a good taping. Good idea about making

copies maybe the station could help you out with the

reproduction.............you deserve that nap.....................Flora

[Guest guest]

Hi Kathy:

GOOD JOB TO YOU AND JOEL! You made us all proud.

Regarding the mascara - well you gave me quite a chuckle as I, for one

hate going out unless I look my best and have taken some teasing over the

years.

Am so glad things went well for the interview. Have a good rest.

Jo.

ta - da! We did it!

> Hi group,

>

> I just got back from the TV Studio and watched the TV interview show

that

> and I just did. I think it went terrific! In fact, I'm thinking

it might

> be good to consider having it available to watch at some of our events.

I

> might take it to the next TeamWalk committee meeting. It's 1/2 hour

long.

>

> Of course I can make copies for people who want one for themselves or to

> share with their neurologists. I just need to find out what it will

cost to

> reproduce and mail out. Later on that. Hey Rita, maybe you can send a

copy to the

> producer you know and we can end up on network tv!

>

> and I each talked a little bit about our diseases -- what they are

and

> some of our personal experience with them. We explained what's going

wrong in

> the nervous system. It was good I brought that flyer I made last night

with

> the diagram of the brain and spinal cord and the upper and lower motor

> neurons! got to show his pedal wheelchair, which we had on the

stage. He found

> that when our MA group went to the Abilities Expo 2 years ago as a

Connection

> outing. It has been a God-send for him to exercise his legs and allow

him to

> continue some activities. He and his wife used it last week to see the

> Boston Museum of Art and he uses it on the bike trail.

>

> I shared about how our communities formed and got organized and how we

> started our own Foundation so we could speed research as well as help

the people who

> need information and support - all volunteers - our community is

amazing.

> And how we are making $240,000 available in Research Awards this year.

And

> about our TeamWalk and National Research and Beyond Conference coming up

here

> in Massachusetts.

>

> Whew, I think we covered just about all the main things.

>

> The Director of the TV Station was fascinated with 's wheelchair

that he

> wants us to consider developing a Documentary about wheelchairs. He

offered

> all the studio's help in filming it, but it would still need some

funding and

> would take a lot of work! Maybe after TeamWalk is over!

>

> Now, here's the inside scoop on my getting ready for this premier, LOL.

> First, I wasn't really THAT nervous, I thought. I have been interviewed

on TV

> before through my career, although it's been a long time.

>

> I was mostly concerned with making sure that could get comfortably

down

> the half-flight of stairs into the studio, since his legs are worse than

mine.

> I told him to meet me there a bit before 9:00 a.m. I was worried about

> getting there on time (one of my idiosyncracies, if you don't know

me...), and we

> have lots of road construction going on in my time so I left extra

early.

>

> I got there way early at 8:30. After I parked, I looked in the mirror

to

> apply my lipstick before going into the building and was horrified to

see that I

> had forgotten to put on mascara! I had eyeliner on, so at first thought

I'd

> just have to go with it. But, I knew they'd do some close-ups of me and

my ego

> took over and I decided to run out to the drug store to buy some and

pray I'd

> be back in time for 's arrival. So, off I zoomed. Of course, the

rush

> hour traffic was worse, and so half-way, I considered turning around.

But I

> decided it wouldn't be a catastrophe if I got back a few minutes after

so

> on I went. I bought the mascara and put it on at a stop light and made

it back

> just as arrived, at 8:57. LOL.

>

> We got the help we needed to get downstairs into the studio and

everything

> went fine. had experience being on camera when he was still

working as a

> pulminary physician, so he wasn't nervous at all. I was a little

nervous, but

> relaxed as we got into it. 's wife Bobbie was our cheering

audience.

>

> So, it's a good interview to hear a bit about our disorders, see people

> dealing them and hear about our community. I'm really glad we had the

opportunity

> to do it.

>

> Now I need a nap!

>

> best,

> Kathi

>

>

>

[Guest guest]

Thanks to all of you for the nice comments about the tv interview show! I

slept well last night.

I'll know in a couple of days what a copy of the interview on videotape will

cost to reproduce and send out.

The interview does not provide detailed information about our diseases. The

time went fast, and of the 30 minutes, the host probably took 10 of it with

the opening and closing of the show and her questions.

So our answering her questions is probably about 20 minutes. It's mostly me

and giving a basic overview of what the diseases are, our own experiences

and how we formed a foundation out of the growth of our online communities

that were started by our email groups (that Cheryl and Mark started). So there

wasn't a lot of time for a lot of detail.

I'm motivated to think about producing a video for us later. The Station

Director suggested an informational one about wheelchairs - all the different

types, buying guide, finances, etc.

But perhaps one about our diseases and general treatment? Or, maybe one with

lots of personal interviews with people from our community. Maybe one on

stretching routines, since stretching is so important for us. I'm cautious to

do one on research, since it's moving so fast for us and would get outdated in

a year.

What type of video do you guys think would be good?

best,

Kathi