Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Kennedy's Disease can be a lonely existence in many ways, but the KDA makes me feel I'm not alone, thank you."

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Kennedy's Disease Chat Transcript  04-01-2006

Topic:  Fundraising

Host: Murray Williams

Chat Participants:




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 !!!!!

Murf: Finally!

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?

Ron--PA: Great!!

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 "" 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

craig_h: :)

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.

Bob: haaaa!

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: 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


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: 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

doughboy: research

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!

Bob: 46

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

Bob smiles

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

MikeG: 48

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...