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Kennedy's Disease Chat Transcript 04-01-2006
Host: Murray Williams
Murf entered the room.
You are in Kennedy's Disease Chat.
There are 1 people in the room.
craig_h entered the room.
craig_h: hiya Murf
Murf: Morning Craig
Ron--PA entered the room.
Murf: Hows your weather?
Murf: Morning Ron
craig_h: it's in 70's !!!!!
craig_h: so tired of cold ................ am ready for summer
Ron--PA: Hi Murf--We are having beautiful weathewr--in the mid 70's.
Murf: Ron - Have you retired Lou Lou?
Ron--PA: Tried to get rid of some of the confusion.
Murf: Good Idea
Ron--PA: Morning Craig.
craig_h: hi Ron, how are ya today?
Dutch entered the room.
craig_h: I've already had my early Saturday morning jaunt through Walmart !!
Murf: Morning Dutch
Ron--PA: Murf--when do you think they intend to start the trials at NIH? They said early April.
Dart! entered the room.
Ron--PA: Hi Dutch and Dart.
Dart!: Good morning y'all!
Murf: They (NIH) will have to get all the qualified people together first
Murf: I would say that we should here something in April on when to go to Baltimore
Ron--PA: Maybe it is just me who is slow.....
Dart!: How does your computer say 'slow', Ron?
Dutch: Good Morning, This is the first time I join this chat. I'll be a silent listener for now.
Dart!: To me, most everything is fast these days - thus the name 'Dart'!
Ron--PA: Just tking its good old time to send messages.
Murf: I',ve been on e-mail....
Murf: Dutch - do you have KD?
Murf: Morning Dart
Ron--PA: Hi Dutch...Don't be a listener. Where are you from. Do you have KD?
craig_h: not as lively a group as 2 weeks ago
Dart!: G'morning, Murf y All!
Dutch: Yes I do. Was diagnosed !1/2 year ago. I'm still doing OK
Murf: Welcome to this very exclusive club
Dart!: A famous philosopher said "lively is as lively does", Craig!
craig_h: I want out of the club ................. lol
Gary_KS entered the room.
Murf: Dart ... sounds like Forest Gump
Dart!: Right on, with Forest!
Gary_KS: Good morning, all. Gary Uchiyama from Kansas. It is a nice sunny day, here.
Ron--PA: How about you Dart. Where are you from and do you have KD?
Murf: Morning Gary
Gary_KS: Morning, Murf.
Murf: Me too Craig!
Ron--PA: Hi Gary--welcome.
Dutch: I live in Poughkeepsie NY and spent my weekends in Chatham NY.
Gary_KS: Hi PA.
Ron--PA: How did you come by the name Dutch?
Dart!: Here is Canada, and I don't know for sure if I am 'blessed' with Kennedy's 'Syndrome', but I have the symptoms, and have lost two brothers with it. They say that if it waddles like a duck, and quacks like a duck, it is most likely a duck!
Murf: TJ is having problems logging on again this morning
Ron--PA: I'm Ron from Lancaster PA...This is Penna Dutch country.
craig_h: I have to go to "http://www.bummerchat.com/premier30/kennedy/chat" to get in
craig_h: then I have no problem
Dutch: I was born in Holland and came to the US in 1961. I am retired
Murf: Criag I'll let him know
Ron--PA: Thanks Craig.
craig_h: okay mruf
emeyerth entered the room.
Murf: Morning Ed
emeyerth: Hello, I finally got on
emeyerth: had to play with the lab's computer
Murf: Dutch - I just moved here (to Houston) from Den Helder in 2000
Ron--PA: It doesn't matter how long we are diagnosed with KD but, how quickly we progress in the disease. Some advance quickly others advance very slowly.
Ron--PA: Hi Ed. Welcome aboard.
Dart!: Hey Dutch! I have a friend with the name J.J. Kerkoff, who I asked 'does that by any chance stand for 'Jacobus Johannes'? And what do you know - bingo!
Gary_KS: It looks like everyone is telling where we from, doesn't it? I was born in Japan and moved to San Francisco bay area in 1984 and was relocated to Overland Park, KS in 1994.
Dutch: I spend about one year in Den Helder in the Dutch Navy.A long time ago.
Ron--PA: Murf--when is our next date with a doctor or researcher to be in the chat?
craig_h: born and raised in Southwest Virginia
Murf: Dutch - I hope it wasn't on that submarine that is moored up there.
Ron--PA: SO---that is where the you'all comes from. LOL
Murf: To days Chat is on Fundraising. We have raised $35,000 to day this year
craig_h: I type like I talk !
Dutch: It was at the Radar training school.
Ron--PA: Great Murf.
Bob entered the room.
Ron--PA: Hi Bob. Welcome.
Murf: morning Bob
emeyerth: Hello, Bob
Bob: First time on here and I don't know what to say yet, had a hard time getting in.
Bob: My wife is here with me..
Bob: Nice to meet all of you
Murf: How is the latest fundraiser (letter to friends) being taken?
craig_h: hi bob, sorry if I mis-spell your name, I always spell it backwards
Ron--PA: I think Ed has done quite well with fundraising thru the marathons. Good Job ED.
MikeG entered the room.
Murf: Bob Welcome
Murf: Morning Mike
MikeG: Thanks, Murray - I had the wrong url I guess
Bob: Thank you - would to much to ask for a real quick who is everyone?
Ron--PA: Bob--what is your wife's name? Be thankful to have a care giver.
emeyerth: I am not sure how well we have done, but I do know that my family and friends are tired of hearing from me ;-)
Ron--PA: Hi Mike.
emeyerth: Hello, Mike
Bob: I am fortunate, also have had to deal with her disabilities since 1997 and both are wheelchair bound. Her name is Lois
Dart!: nd welcome to Mrs.Bob as well! WQe don't tell bad jokes here, except the backwards spelling of 'Bob'!
Murf: http://www.kennedysdisease.org/disc_chat.html I never thought to check the url. Will have to discuss with Terry.
MikeG: Hi Ron. Did it ever stop snowing up there... LOL
craig_h: was I just accused of bad joke telling? gasp
Ron--PA: Sorry to hear about Lois. Chairs sure do help us get around.
MikeG: Yep - web page is incorrect...
Murf: My people at work are too Ed but I keep on them anyway
Ron--PA: Finally--and it is getting warmer too.
Dart!: Sorry, Bob and Lois - that is a bummer deal, with the wheelchairs and all, but if there is a plus to it, you ARE mobile!
doughboy entered the room.
Bob: Emeyerth-we are supposed to be attend a family reunion tomorrow but even my family has cut me off see learning of the KD
Ron--PA: There is always a brighter side to each story. Look for it.
doughboy: Finally, thank you, Craig! Good morning everyone
fl-don entered the room.
Bob: That is how we are trying to live
Murf: TJ you made it
fl-don: HAD PROBLEMS GETTING INTO THE CHAT
doughboy: yes murf, thanks for the email
craig_h: glad ya made it
Ron--PA: Hi TJ. Glad you made it.
Dart!: How disgusting that people are so inconsiderate! Almost makes a person want to be able to pass it on!
doughboy: Thnak you Craig
doughboy: Thank you Ron
Murf: Craig made it happen this morning. Thanks to Craig!
craig_h: I actually just did a google on "bummerchat kennedy"
Ron--PA: Hi Don. what is happening with the problems to get into the chat.
doughboy: Well, how are we doing on fundraising
fl-don: not sure , password and name problemsd
doughboy: Me too Don
Murf: I will bring up this problem in the next BOD meeting. we need to have this easy
Murf: We have raised $35,000 to date this year
Bob: ours problem getting it keot saying the nickname was already used...finally I held down the control key and got in
MikeG: I think the link is wrong on the KDA web page
Murf: That is from all fundraising campaigns
doughboy: How does that compare as far as other years at this time.
Murf: We still need $15,000 to reach our goal of $50,000
MikeG: When Murray sent me the corrected link: http://www.bummerchat.com/premier30/kennedy/chat/ I got right in.
Murf: This is the best year in memory (my memory anyway)
Dart!: What is done on the 'campaigns', Murf?
Ron--PA: Murf is doing a bang up job at raising monies for the KDA. Thanks Murf.
fl-don: well, back to doing taxes. cya later all
fl-don has left the room.
doughboy: I see a lot of new names on the chat this week! Hello everyone, I'm from TEXAS and I am a friend of Murf's.
emeyerth: What fundraisers have been the most succesful?
Bob: We have a modeste E-store that we are building and we want to donate 10% of some of the more exoensive items to KDA, how does the group feel about that?
doughboy: Hey me too Mike
Dart!: The E-store in Ebay?
craig_h: what kind of stuff on e-store ?
Murf: Dart we have a letter that everyone sends out to friends at the moment. Do you have the letteer?
Ron--PA: GREAT!!! Way to go Bob.
doughboy: Can you explain what that is BoB?
Bob: yes it is
Murf: We do ebay auctions
Murf: I have a campaign or two at work (they just sent a check to Terry for $900
doughboy: Do we get notified of when they are to take place so we can let people know?
Dart!: I did get a letter re: fundraising, and want to participate. The E-store sounds interesting - tell us more!
Bob: because KD is new to us, I tried to explain the disease a bit in the ad and ask the buyers to come to this site to read more about the disease. The money that gets donated does not come to us at all it goes directly though a 3rd party to KDA
Murf: Ed - I think this lettere that TJ and Kathy put together would be the most Successful
craig_h: I'm not much for sending letters for donations, but I'd be happy to send people to an e-store
Bob: Right now we would like to list one item per month and then more frequently as time goes by
doughboy: Hey however you can raise money, the better!
Murf: We can do a lot of things like Casinos (TJ likes that idea too)
Bob: As things sell, we would replace them with other items that would be high priced to always have something for sale for KDA
Ron--PA has left the room.
doughboy: I would like to have a casino night, we have done it before for the Heart association but it's a lot of work
Murf: Bob you can do it any of those three ways
Ron--PA entered the room.
Bob: To let people know I did email Terry & Susan or you can go to Ebay and do a search under Kennedy's Association for charity auctiond
Ron--PA: Hey--I got the boot from the chat.
Murf: Craig - send them to the web-site to click the "Donate to the KD" buttonA
craig_h: ok Murf
Murf: It has 5 ways to donate
Bob: What other ways have you raised money in the past and what is the money raised for being used for
craig_h: maybe next time Doctor Taylor comes into chat, we can charge admission
craig_h: $10.00 a question :)
Murf: We earmark 70% of all donations to Research
Murf: The rest goes to things like operating expenses and mailers like the 10,000 we sent out to neurologists last year
doughboy: Bob, do you have any other ideas or if you come up with some and that goes for anyone, we would love to hear about it!
Murf: Also Conferences
Bob: My wife contacted Terry & Susan last week when we wished to list our first Ebay item for KDA and you were not in the Charity list on Ebay and now you are so ANYBODY can now sell on Ebay for KDA!
doughboy: Who here plans on going to the conference this year, brother Bill and I are and look forward to meeting you guys!
MikeG: I'll be there
Murf: On the KDA website we also have shopping to aid the KDA
craig_h: what happens at this conference ?
Dutch: I plan to be there
Bob: when & where is the conference
doughboy: Great, look forward to it! Beer parties!//4
doughboy: It's in Atlanta, right!
Murf: When you order at Amazon you can go to the KDA site and up in your order there. We get a donation from Amazon if you do that
Dart!: Shopping, Murf? How that that work?
doughboy: Hey Murf, Atlanta correct
Bob: When in Atlanta and how much is it?
Dart!: Pretty good, Murf - you answer the question before it is asked!
Murf: Craig - we have drs. & researchers
doughboy: Hey Murf, tell Bob about the conference
Gary_KS1338 entered the room.
Murf: Atlanta Oct 11-13th 2006
Gary_KS1338 has left the room.
Ron--PA: 70% of all monies received are scheduled for research and some of the balance is scheduled for educational and fundraising.
Gary_KS has left the room.
Murf: It will be $160 eary registration and $195 at the door
doughboy: Hey Dutch, Dart and emeyerth where are ya'll from?
Ron--PA: Hi Gary--come on back.
Murf: Same as previous years
doughboy: Shane, Shane comeback!//1
Bob: That sounds good, I don't know that I could make it as I am deteriorating rapidly
Gary_KS entered the room.
Dart!: This one is in British Columbia, Canada, right up against the Rockies!
Murf: We will come out with details very soon to register
MikeG: What % does the KDA get for Amazon & eBay sales?
Gary_KS: Sorry, I hit a wrong key and was kicked out.
doughboy: I bet you have great scenery! Hey Bob, be positive you can make it, Friend!
emeyerth: I was raised in many places, mostly the northeast, spent most of my adult life in the midwest and now live in Austin
doughboy: Not far from Murf and I
emeyerth: nope, although right now I am in Philadelphia
Ron--PA: You Texas boys have a great group out there.
emeyerth: I am doing a sabbatical leave working in Diane Merry's lab at Thomas Jefferson U.
Murf: Bob - Me too but I give it all to get to these. They are unbelievable and hard to explain how you feel unless you are there.
doughboy: I just retired from the Texas Highway Patrol and had to go to Austin all the time for hearings and such!
craig_h: emeyerth ........ you a KD researcher or patient or both?
Ron--PA: Greqt--we have a TOP COP!!
doughboy: Yes we do Ron, go ahead, amit how GREAT TEXAS is and move down and join us!
doughboy: Aw come on Ron, Top Cops are great
emeyerth: a patient who is doing research for 1 year - I normally teach at the community college in Austin where there is no research
Murf: Ed Meyertholen & Mike Goynes are the new members of the KDA BOD
Ron--PA: Didn't mean anything but great TJ.
MikeG: Ed, are you still able to run 10Ks?
emeyerth: This has been a once every six years opportunity
doughboy: Well thanks for all of your work in this field.
Murf: Ed will be speaking at the conference this year
craig_h: that awesome emeyerth
emeyerth: Mike: yes, I have been injured though
craig_h: oh ...... Ed is emeyerth ....duhhhhhh
MikeG: That's unbelievable!
emeyerth: not sure I have any marathons left, but I am hoping to train for the Chicago Marathon wiht my daughter
doughboy: No Ron I'm not sensitive I was bs - ing you! no offense friend!
Ron--PA: Ed--How did you get to be in Dianne Merry's lab and what do you do while there.
Murf: Ron - you should go for lunch with these guys & galls
MikeG: You need to get in touch with my brother, Tom. He lives in San Marcos.
Gary_KS: Ed and Bob, thanks lots for your contribution.
Bob: MikeG- Ebay sales depends on what the Seller decides to donate...our item is $299 with a best offer and we are donating 10% as Bob is getting a very nominal disabilty check and Lois is also disabled. The item is a brand new clarinet with the works if you know of someone like a school child who would need one. In the future we plan on offering items with as much as 50% donation.
doughboy: What's he do?
Ron--PA: TJ--How is Bill doing?
emeyerth: I applied for a sabbatical from my college and aske Diane if she wanted a free worker for a year - she said yes.
Murf: Most cops I've seen without getting arrested
emeyerth: I have a specific project that is o
emeyerth: sorry, hit the return by accident
doughboy: Aw Ron, he and I were talking this morning, I can see he is getting a little worse all the time!
emeyerth: My project deals with the ability of the cells to remove the AR
Ron--PA: Great Ed. Who can turn down a volunteer, Right!!
Murf: Thats Great Bob!
emeyerth: I have had a great time here - a great lab with great people
MikeG: That's great, Bob. I do eBay all of the time - I'll add the KDA to my sales!
doughboy: Thanks Mike
emeyerth: Ron, that was my feeling!
Murf: Dr. Merry & her staff are Great!!!!
emeyerth: Murf, for sure.
Murf: Ed- Please pass on our gratitude
doughboy: Hey I just opend an ebay site yesterday, which I'll be mainly selling antigues, but I don't have it all set up yet. I'll do the same
Ron--PA: TJ--You'all have a horrible time within the family. Brothers and sisters all leaning on each other. Hang together....
Murf: WOW hard to keep up today!
Bob: doughboy - if you have questions on selling please get in contact with us as we would be willing to help you
Bob: Is anyone still working fulltime
Murf: I am
doughboy: Everyone, I just want to tell all of you fellow KD friends that I'm around Murf all the time and I see how hard he works for KD and I just want him to know we appreciate him and all the rest who try to improve the association! Thanks, Murf!
craig_h: I work full time
emeyerth: I do as well
Murf: TKS TJ
Bob: do you all fall down?
Ron--PA: Great leadership, Murf...
doughboy: Thanks Bob, send me an email and tell me how to get in touch with you. My email is on the KD site! TJ
MikeG: same here, Murf
Bob: mine should be too
Murf: I use a chair at work
doughboy: Heck yeah, How many have reflexes left in their legs!
craig_h: occasionally have to work from home, my company has been very supportive
Murf: I've had non for years
Ron--PA: A great part of KD is falling down--Getting back up is what makes us stronger.
craig_h: knocking on wood ...... not fell in a long time ....... hope I didn't jinx myself
doughboy: Hey medicare bought me a new power chair last month! Well said, Ron!
Murf: Mine too Craig - I'm the only GA at my company that doesn't fly anymore
Bob: my company gave me a psuedo subbatical in case I can come back to work in 1 year, I broke my hip in Oct before being diagnosed
Murf: Well put Ron!
doughboy: How old are you Bob, if you don't mind!
doughboy: I'll be 50 on May 5, 2006
craig_h: but the did ask me about going to the Czech Republic on a trip ...... I was like, I haven't been 30 miles from home since september !!!
Bob: doughboy - do you work at a bakery
doughboy: Murf is taking me out to dinner at the most expensive place I can find. LOL!
doughboy: No Bob I just retired from the Highway Patrol
MikeG: while I'm thinking about it - everyone should fill out the My Profile so we can get info on each other
Murf: who's murf?
Ron--PA: I'll be 66 on May 3,,TJ.I knew we had alot more in common than just having KD. We are the May boys.
craig_h: <<----- 46
doughboy: Oh, some guy I know, who has a big heart!//33
Murf: and no legs
Bob: doughboy - I'd like to switch nicknames with you as I worked at a bakery for 28 years//2
doughboy: Heck yeah Ron, bill and I will join you in Atlanta for so laughs
emeyerth: one more - I'll be 52 in May
doughboy: Well do you look like me about 250 and a gut!
doughboy: Hey murf just turned 70
Murf: I feel like I did
doughboy: I mean 50
craig_h: well ............. see y'all in another 2 weeks
Bob: no I have been a steady 170 most of my life //1
Murf: This has been a GREAT chat today
doughboy: How old are u Mike!
Ron--PA: TJ--no I am 160 and a gut.
emeyerth has left the room.
doughboy: Well does your chest muscles hurt
doughboy: Your young too!
craig_h has left the room.
Murf: We can continue chatting as long as anyone likes (it's our chat page)
doughboy: Do you work still
Bob: not chest muscles, just leg muscles hurt...END CHAT