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Kennedy's Disease Chat Transcript 03-20-2004
Topic: Regional Chapters
Host: Bruce Gaughran
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: 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 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
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.
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:
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
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.
murf: Duane - do you want me to send you the link?
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.
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
Bruce: Yes, this chat software is great (thanks to Terry). I think it makes chatting so much easier
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
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!
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
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: 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
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)?
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
Bruce: Thanks, Paul. That is appreciated
murf: Take care all
murf has left the room.
Bruce: No hurry
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