Kennedy's Disease Association

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"Surfing the internet I found the KDA and for me it was like an island for a castaway."

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Kennedy's Disease Chat Transcript  03-20-2004

Topic:  Regional Chapters

Host: Bruce Gaughran

 

Chat Participants:

Terryw
PA-Paul
BUTCH
Stevefu64
Bruce
Gary_KS
Chuck
JohnM
Billeric
Duane
Murf
JoeK
MICH


BEGIN CHAT

Terryw: BEGIN CHAT TRANSCRIPT LOGGING NOW

Bruce: Good Morning, Steve

Bruce: Good Morning, Duane

stevefu64: good morning

duane: good morning from fort worth

Bruce: Well, the subject today along with anything else we want to talk about is REGIONAL CHAPTERS of the KDA

duane: any ideas on the geographical makup of each region?

Bruce: Paul DeSchamp has volunteered to help set up a NE region (you might have seen Terry's email earlier in the week.

stevefu64: well iam certainly grateful to the ass for info and stuff

PA-Paul: They sound like a good idea. especially with time difference.

Bruce: Regions are something that needs to be developed, but ...

MICH: I have yet to meet or find a person from Oregon or Utah, both my most recent residences with KD.

Bruce: the NE includes Maine, NH, VT, CT, NY, PA, RI, NJ, MA, DE, DC, MD, OH, WV

billeric entered the room.

murf: Lots of people in the NE

Bruce: Also, VA, MI, IN, and KY - It is a huge region, possibly too big. We'll see

duane: Perhaps a South Central could include OK, TX, LA, NM

Bruce: Good Morning

murf: Morning Bill

Bruce: Maybe even Arkansas

duane: yes

duane: and Colorado

billeric: Good morning guys from warm Phoenix

duane: too warm

PA-Paul: Is Paul DeSchamp joining us this AM

Bruce: The reason for the chat today is to see if there are others interested in helping to set up chapters within a specific region

billeric: Little too warm in the sun

Bruce: I don't know if Paul will or not

murf: There is only a few of us in Texas

Bruce: Also, the FL contingent has had their first get-to-geher

Bruce: John has taken on a leadership role to get that started. It hopes to branch out and include, GA and SC, perhaps AL and NC

Bruce: The FL group just wants to get together to socialize initially and get to know one another and the families

stevefu64: sure wish we had this kinda support here in Canada

Chuck entered the room.

Bruce: Well, Steve, it usually starts with one person and grows from there

murf: Bruce - I think that is a very good idea

Bruce: Good Morning, Chuck

stevefu64: yeah that's true

PA-Paul: Just my 2 cents BUT would it not work best if the groups stayed with the time zones to start with???

Bruce: The concept is to not make them a lot of work initially. They are initially being set up to develop a support network

Chuck: Good Morning to all.

stevefu64: hi chuck

Bruce: That sounds reasonable, Paul, but it could possibly overlap

murf: Morning Chuck

duane: Definitely keep the regions small enough for those needing to travel.

Bruce: I think that is the KEY Duane. We talked about it in the South and we said travel should be less than four hours drive time to a get-to-gether

Bruce: However, other regions might have different ideas

duane: I agree. Is there a way to use the KDA chat for regional chat sessions? Maybe on the off week of nat'l KDA chat?

Bruce: It appears from many that I have talked to that the relationship building is an important reason for the desire for regional chapters

murf: I guess we should let the regional chapters decide how big they want to be

Bruce: YES

Bruce: Yes to the chatroom use also

Bruce: Terry set up the chatroom for any region or group or just individuals

Terryw: Duane once you find your regional members and put them on your mail list just send them a mail telling them to meet in the KDA chat room

duane: initially meet in a central location to all in the region.

murf: and he did a good job of it!

Terryw: at a certain time

duane: great.

Terryw: just not during the scheduled KDA chats on Sat

Bruce: The key is to get a few good men and woman to take on some leadership responsibilities if they are interested in regional chapters

Terryw: Thank you Murf

duane: should we contact our local mda coordinator for a list of prospects. i.e.....those not members of KDA contact list?

Terryw: Anyone see the movie Seabiscut?

Bruce: You could do that Duane, Yes

Bruce: Yes - it was good

stevefu64: is it a great movie terry???

billeric: I did Terry. Really good movie

Terryw: It had a great saying in it, I saw it this week. the saying was " Just because your a little beat up that's no reason to waste a life"

stevefu64: lol that's good to hear

Terryw: It really hit home

Bruce: We would also work with the regional leadership - by sending out an initial inquiry email

murf: I might have to rent it then

Bruce: It is worth the cost of admission

Bruce: The film and a regional chapter...

BUTCH entered the room.

murf: Is it out of the theaters yet?

Bruce: Good Morning, Ron

Terryw: yes for a long time now murf

murf: Morning Ron

Terryw: Sorry Bruce for taking you off topic

duane: murf, are you interested in working to get regional chapter in TX and surrounding states?

Bruce: Well, if anyone is interested in working within their area to help establish a chapter, please let Terry or me know and we will help initially (brainstorming, initial email offering, etc.)

BUTCH: HELLO TO ALL.TOOK 20 MIN TO GET ON CHAT. DO YOU GUYS HAVE CALLER ID?

murf: Duane - we could

Terryw: Caller ID?

murf: Duane - what are your thoughts?

duane: I'm interested in this. As there are no KD support groups in my area. Only ALS or CMT.

BUTCH: I thought you knew it was me trying to get into the chat room.And if you knew it was me, I was denied access.

Terryw: LOL, why would I do that butch

Terryw: Your java console may not have loaded correctly

murf: Duane - I'm in Dallas once in a while and I'm always available to anyone for anything

Bruce: In the South, we talked about having a 'drive-in' get-together someplace in northern FL. Spend a weekend at the Holiday Inn Express (or the like) and play games, talk, eat, etc.

PA-Paul: Terry Does Paul DeSchamp have a user id for the chats???

Terryw: Java is the little background program that loads up prior to running the chat room

Terryw: its invisible

Terryw: let me check

duane: murf, we can e-mail or phone call to discuss. I'm very interested.

BUTCH: I don't know, but I have had a hard time getting into the new KDA chat. I did the JAVA program but, still having trouble.

murf: ok

Bruce: So, it sounds like this is something of interest to most everyone on the chat this morning. Right? Only respond if it is not of interest.

Terryw: No I don't think Paul Has registered yet

duane: Butch, are you running IE, (Windows internet explorer? May need to enable your JAVA plugins.

PA-Paul: thanks Terry

Bruce: There were some initial guideline established, but since this is a new concept they might be changed as time goes on.

Terryw: his Java must be working Duane now or he would not be here

Bruce: The guidelines/ideas/concepts are:

Support Groups

Camaraderie/Sharing

Fundraising to help raise money for Kennedy's Disease Research

Distribution of information

Education – no more than one or two speakers

These meetings need to be organized, funded, and supported at the local or regional level. The meetings should not conflict or compete with any Kennedy's Disease Association conferences, symposiums, fundraising events, educational programs, etc.

PA-Paul: sounds real good.

Bruce: Again, these were some initial thoughts, but can be modified if a need exists

Bruce: Good. Thanks for taking the time to share your thoughts and support. Remember: If interested in participating in the setting up of a region, please contact Terry or myself and we'll chat some more.

BUTCH: I will be sending the check for the lottery sales. My LIONS club added another $900.00 so we will be sending $4000.00 not the $3100.00 from the lottery itself. We are going to have the newspaper there when the lions club presents the check. I think the club wants to present the check to Anita and Annette. Thru the paper maybe we can educate folks about KDA and our projects.

Bruce: What else do you want to talk about today? Did everyone get a chance to report the La Spada study? There is again a little hope out there, but only time will tell.

Bruce: GREAT, RON!!! Thanks so very much

Terryw: That is great Butch

PA-Paul: OUTSTANDING JOB Ron!!!

Bruce: It was innovative and gave people a chance to win something

murf: Thats great Ron

JohnM entered the room.

Bruce: Good morning, John

murf: morning John

JohnM: Good Morning all. //1

BUTCH: It was fun and a great way to educate people who never heard of Kennedy's.Anyone who has a state lottery can do the same.

murf: I wonder where John-c is this morning, I miss the joke of the day

Bruce: I know when I read through the La Spada paper, my eyes started rolling back (I was lost through most of it), but the paper closed with some hope - more research is needed, but still hope

billeric: Mornin' John.

Bruce: John, I won't even ask how warm it is in FL today because it is 76 in GA.

Terryw: Susanne on for just a sec: It would be great if others will volunteer to take on the role of heading up regional chapters - they can be anywhere in the world... I know there are 3 individuals who meet in Florida (John, Don and Mike) already and might want to expand that to a regional chapter as well! Gotta run and give the keyboard back to Terry! Have to prepare for the KDA Conference & SYmposium planning committee meeting after this chat

Bruce: One other item the BOD is working on with our researchers is whether they are interested in a RESEARCH section of the KDA website. Initial responses are very favorable to this.

JohnM: I think we'll be getting into the 80s today.

BUTCH: Did anyone do the Melbourne survey?

Terryw: I did

Bruce: Yes

stevefu64: me to

PA-Paul: I did too

Terryw: It was real easy, took only 10 min

murf: Yes I did

Bruce: It was interesting seeing the drawings and pictures

billeric: me too

stevefu64: yeah hey?

BUTCH: It was different than any other survey.

duane: Huh, Melbourne study? Did I miss something?

murf: That great, we are supporting everyone

JohnM: I did the Melbourne survey also.

duane: survey

murf: Duane - do you want me to send you the link?

duane: please

JohnM: I had trouble picking out what I looked like from some of the pictures.

Bruce: When it comes to KD, WE are he experts

MICH has left the room.

stevefu64: i was a little confused on the baldness aspect of it tho?? where;s does kd fit that catgory??

Terryw: If you did not take the survey you cantake it here http://murdoch.rch.unimelb.edu.au/pages/kennedys/page1.asp

Bruce: We asked the same question, Steve, but they have had indication that there might be an association in some cases

stevefu64: ohh ok ty

BUTCH: I told them that most of the KDA individuals have a full head of hair. This was an observance from the last two conferences.

Bruce: Ref. the Research Web Page, several of the researchers said they would contribute articles and papers to help support the project

MICH entered the room.

Terryw: Go to that link and at the botttom of the page is the button to take the survey

PA-Paul: Terry are the pictures of the NO conference posted on the KDA site?

JoeK entered the room.

Bruce: Before I forget, I want to thank everyone for taking the time to participate this morning.

JohnM: You didn't see me at the conference, Terry, or you wouldn't have told them that.

Bruce: Good Morning, Joe

Terryw: I have not done them yet, I am sorry, to many other fires here right now, I will try to get some of those pictures up on the site, we had so many sent to us along with our own we took there were over 200

Terryw: I may put up about 50

Bruce: And, if you joined us late, you can read the entire transcript on the KDA web site in several days

JoeK: Hi to eon

murf: duane- took me a while to find it but I just sent in to you

Gary_KS entered the room.

Bruce: I gather it is warm in NC, Joe

Terryw: I will try to have this transcript posted by Monday

JoeK: Hi to all from NC

Bruce: Good Morning, Gary

PA-Paul: No Rust I just thought I missed them> Great Job you are doing with everythiong

Gary_KS: Good morning all.

PA-Paul: RUSH

murf: Thanks terry

Terryw: WOW 13 of us here today

PA-Paul: morning Gary

Terryw: Hello Gary

PA-Paul: Gary is the KS for kansas

Chuck has left the room.

Bruce: I will repeat my message for the ones joining us a little late: Terry will post the entire chat room transcripts in a few days if you want to read what you missed this morning.

JohnM: Looks like the biggest turnout yet. Must be the new chat room.

duane: murph, thanks, Takes awhile for ISP to deliver mail.

Bruce: Terry jinxed us with this 13//8

stevefu64: yeah this new chat is awsome lol

Terryw: Duane did you see? I also posted the link for the survey above

Terryw: //1

Bruce: Yes, this chat software is great (thanks to Terry). I think it makes chatting so much easier

stevefu64: //0

murf: Looks like you're more on the ball this morning than I am terry//0

stevefu64: it sure is

Bruce: By the way, Steve, what is SASK like this morning (temperature-wise)

duane: Not yet. May take 10 - 15 mins to receive. Murph, I'll send you a quick e-mail today. Have to do grocery shopping after chat session.

Terryw: I can still do some things right :)

stevefu64: plus 4 here

murf: ok

BUTCH: Terry--Tell Susanne thanks for the letter of appreciation for Mary Lou and myself. It was not needed. We did the lottery to help all of us. It was a real group effort. Thanks again.

murf: That is +4 celcius

billeric: Kind of like Seabiscit Terry!

Bruce: COLD!

stevefu64: yes its still freezing a little but kinda melting in the afternoon

Terryw: Yep Bill

Bruce: JohnM, did you guys get together in FL yet (you had planned a FL get-together)

stevefu64: //7 i hate the cold lol

Terryw: It was well deserved butch.

murf: Steve- it's 74 in Houston

BUTCH: We had snow on Friday morning. Today it is warming up and most of the snow has melted here in PA.

stevefu64: i know am jealous lol

duane: 69 in Dallas/FtWorth

Terryw: I may take the boat out fishing tomorrow

PA-Paul: 38 in PA

Terryw: 1st time this year

murf: Terry can I come?

stevefu64: u like fishing terry??

JohnM: We had five of us meet for lunch in Venice. Had a really good visit.

Terryw: I am doing a fishing Derby on May 3-4, $10,000 trout tagged

Bruce: Terry uses his toes as bait

stevefu64: wow

stevefu64: lol

Terryw: and many other fish are tagged for $500 -100

murf: Good luck Terry

Bruce: Venice is a nice community. One of my favorites in FL

duane: high dollar fish fillets

Terryw: I need to take susanne to have her tie the lines for me since my fingers are not what they were, I just need to teach her the Knots

murf: I'm off for a bass fishing trip in Lake LBJ next weekend

JohnM: There's no way I could get out of a boat.

Bruce: I was thinking the same way, John

Terryw: John have you tried

stevefu64: some of u guys should check out the northeren fishing resorts up here in northeren camps there excellant

PA-Paul: I agree with that How in the world do you get up out of a boat???

stevefu64: in sask

Gary_KS: 62 in Kansas City.

billeric: That's my trouble John.

JohnM: We didn't get too far into Venice. We stayed close to the highway.

murf: A friend of mine has a pontoon boat. it's level with the dock

Terryw: John, what if the boats side met up even with the dock and you sat on the edge and pivited

Terryw: or a party barge

Terryw: Yes Pontoon boat

Bruce: I like the idea of a pontoon boat. That I could handle. I use to do a lot sailing, but near the end couldn't get out of the boat. BUMMER //7

Terryw: John, yes I can see how one of those in Venice would be hard to get in & out of

JohnM: Once I pivitoted, how do I then get up?????

murf: Steve - I used to fly in to some of those northern lakes. Good fishing!!

stevefu64: really good to hear

BUTCH: You know that you really want to do something---there ALWAYS is a way to do it. KD guys are very resourceful.

Terryw: I understand John, I can still get up from the dock if I do my baby standing position on all 4's

stevefu64: yes we are lol

Bruce: Being from MN, we use to canoe into Canada (Land of the Lakes region). It was great!

MICH: Any March Madness fans... and what team is going to go all the way?? As far as pivoting by the water... my bathtub is a challenge enough!

Terryw: I did not consider that for you

duane: mee too. LOL

Terryw: sorry

Terryw: John a pontoon boat would be your best bet, try to rent one for a day, go to the lake and ask them if you can see if you can get on and off

JoeK: Duke or NC to make the final 4

Bruce: My wife and I use to fish the inland water ways of FL, but had to stop when I couldn't get out of the boat

Bruce: DUKE still looks tough down the stretch

BUTCH: I think NC should go all the way.

Bruce: I would love to see the Tarheals make it to the Final Four

PA-Paul: Terry ** A question back on the Regional thing. Is there a way to have a note page or information note as to what each region is doing? including dates and times and locations.

Bruce: Great idea, Paul

murf: Ya Good idea

duane: yepper

PA-Paul: well if any of us travel and pass through lets say Venice it might be nice to join the group as a surprise..

Bruce: That would be good to have a page for each region - pictures, news, meetings, etc.

JohnM: So far we haven't gotten to much of a response from people I have contacted abouut a regional get-to-gether.

Terryw: Thats possible, we can do that most likely, we will see what kind of response we get first on these meetings and go from there

Terryw: Ahhhhh Bruce,,, More web updated LOL,

Bruce: John, we can send out a email from the KDA asking anyone interested to respond to ??? (who)?

Terryw: Updates

MICH: I have alot of desert and mountains between me.... and I guess Phoenix is the closest place I know of with KD members??

Bruce: Sorry, Terry. It is easy to volunteer someone if you don't have to do the work. Actually, there might be a way for the region to submit the information and just cut and paste. We can think this through and I might even be able to help.

JohnM: Bruce, you can have them respond to me. I'll keep track of them.

PA-Paul: well terry you do have 2 groups so far correct the northeast and the southeast

Bruce: Eric, if you want to volunteer to help organize a chapter, we can also send out an email from the KDA asking for interest. It is up to you.

Terryw: No official word yet from the SE. They need to let us know

Bruce: Terry, perhaps we can chat afterwards on how I can help

PA-Paul: I will contact PaulDeSchamp and offer to help

Bruce: JohnM is working the SE and that is where the KDA can help by sending out a general notice of interest

Terryw: Bruve, Susanne has to prepare for the Conference call meeting, maybe later though

murf: Nature is calling (yelling) got to go

Terryw: Bruce

Bruce: Thanks, Paul. That is appreciated

murf: Take care all

murf has left the room.

Bruce: No hurry

PA-Paul: BYE

BUTCH: Last year John C., Charles R., and myself met for lunch. It was a very enjoyable time. We got to talk about vrious subjects beside KDA problems. We all had about an hour drive but, it was really worth it. Great time. We had W. Va., Maryland and PA.

PA-Paul has left the room.

duane: I'll contact murph this afternoon. Work to get a SC region started.

Bruce: It doesn't have to be a lot of people to get started. It can be very informal initially. It is just showing interest and having some fun

Terryw: I am going to end the transcript logging in a few minutes so any last comments you want logged type them now

Terryw: tht chat can go on though

Bruce: Terry, I'll also copy and save the notes. Let me know if you need them

JoeK: good chat

Terryw: ty Bruce

BUTCH: Good chat. Stay healthy till next chat. See you all. Bye.

stevefu64: excellant Bruce

Bruce: GREAT CHAT. thanks to everyone for pariticipating.

BUTCH has left the room.

JoeK has left the room.

billeric: Bye Guys

duane: gotta run (walk) do my shopping. bye all

Bruce: Stay healthy and happy

Terryw: END CHAT TRANSCRIPT LOGGING

 

END CHAT