Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript  11-05-2005

Topic:  Fundraising

Host: Murray Williams

Chat Participants:




murf entered the room.

wolfman entered the room.

murf: Morning Wolfman

wolfman: Hello and good morning

murf: Hows the weather up there?

wolfman: How have you been?

murf: I'm ok no hurricanes lately

wolfman: It is cool, we had our first snow about a week ago but otherwise typical fall weather

murf: I miss the trees turning and the smell of fall

wolfman: That sounds good, I wouldn't want to be in one

murf: But not the 20 b elow zero

wolfman: Yes, that is why I am still here.

LouLou entered the room.

murf: Morning Ron

wolfman: we have had a very nice colorful fall

LouLou: Good morning Murf and Wolfman. How are you guys doing?

Bruce entered the room.

murf: Morning Bruce

Bruce: Morning everyone

LouLou: Hi Bruce.

murf: Hows the leg?

wolfman: Good morning all.

Bruce: What is it like up in Alberta today?

wolfman: Cool but not too bad

Bruce: Murray, are you totally recovered from the foot injury?

LouLou: Here in the north east it is beautiful with all the fall colors on the trees.

wolfman: Our first snow has melted away already.

LouLou: What did you do to your foot?

murf: Todays chat is about fundraising ... any ideas are welcome

kelly entered the room.

Bruce: We are in the mid-70's every day now with low 50's at night.  Nice fall weather.

murf: My foot still gives me problems

Bruce: Morning, Kelly

murf: Morning Kelly

kelly: good, mornin all

LouLou: Hi Kelly.

wolfman: Morning Kelly

kelly: hi wolfman how are ya??

murf: Here too Bruce 76 at the moment

Bruce: Well, for those still working, I might recommend that they do what you did Murray and sponsor an internal fund-raiser.

wolfman: Good, just back from holidays at the westcoast

LouLou: Only 57 here in Lancaster, PA.

kelly: cool. must be nice to travel abroad hey lol

wolfman: wonderful

kelly: little snow here today wet and cool

wolfman: been through yhat last week

murf: This months Guidestar had a piece on fundraising

Bruce: I also like the idea of localized mailing packets that KD'rs could send to family and friends asking for a donation to the KDA.

Bruce: Where did you go on the west coast, Wolfman?

kelly: those mailing packet's on kd are very informative,,, yup good idea.

LouLou: Murf--your efforts at work are appreciated by the KDA. I know we don't say enough about your efforts. THANKS!!!!

murf: Kathy sends regrets she cant make the chat but she has a good idea

wolfman: Van Island to Ucluelet and Tofino, waves as big as a house, just great for photography

murf: I only send out a few e-mails. I think we all need to

murf: Wlofman - you do any fishing out there?

wolfman: no, I am too crippled to do that anymore

Bruce: I also like what Ed M. did with the 'run' and having it promoted on the fund raising web site.  I think he is up to $360 on web donations (as of two days ago).

murf: Me too so now I fish for the little ones

doughboy entered the room.

murf: Morning TJ

doughboy: good morning

Bruce: I use to sail the San Juan Islands when I was a little younger and in better condition.  It was one of my favorite things to do.

LouLou: Hi TJ> How are you?

doughboy: How's it going?

murf: Bruce - does he take credit cards?

Bruce: Morning, TJ

Bruce: Yes

Bruce: I gave a small donation Thursday.  It is simple to sign up and easy to use.

doughboy: Hi ya'll,  well Lou I found out wednesday I have type 2 diabetes and starting next wed. I start taking 2 injections a day!

murf: Bruce check this out later and see what you think

LouLou: Isn't it amazing how Ed can still run a marathon. I have a hard enough time walking let alone running.

Bruce: I would recommend that we keep this Fund Raising web site in our pockets for anyone sponsoring a local event.

Bruce: Okay, Murf

LouLou: TJ--I thought type 2 diabetes didn't require shots--only pills like metformin.

doughboy: My bruno lift was installed in my suv yesterday no I can carry my equipment.  I'D like to get someone to help me pay for it, cost me $2,500.00

Bruce: Talk to the MDA TJ

doughboy: Lou there is a new medication out called Byetta and it's injections

LouLou: Thanks for the info.

doughboy: Supposed to help you lose 15 - 20 lbs. a month also.

murf: TJ says it reduces wieght so I think I need some LOL

Bruce: That is a lot of weight to lose every month.  What happens when you reach your desired weight?

murf: It all comes back LOL

doughboy: Heck I know I need too! Well what are we talking about today? I don't know Bruce, good question.

doughboy: Have faith, Murf!

murf: Fundraising

murf: Bruce did you get Kathy's stuff?

Bruce: Kelly and Wolfman, I miss Pacific Salmon ... especially Coho and Steelhead.  I also miss Pacific Halibut.

doughboy: Well I have to talk to my brother in Florida, he runs Ozarka water co. and he has offered to help me put on a golf tournament, which he has done in the past for other great causes.

LouLou: Did someone save the chat? I don't see a moderator.

Bruce: No, she said she sent it, but I never received it.  Did you get it?  If so, can you forward it?

kelly: sorry back

murf: Ron I'll save at the end as I'm hosting

kelly: gosg bruce i dont fish lol sorry lol

Bruce: Sounds good, TJ.  It always helps to have someone that knows how to set up an event like that.

murf: I'll get it to you

doughboy: So if we want to hold a golf tournament in the Spring, who with the KDA do we talk too before getting started?

Bruce: When I moved to the east coast, you can't buy western Salmon.  Most of it is farm raised these days.

JoeK entered the room.

doughboy: I mean certainly the board I'd guess would want to be involved or maybe not, I don't know ya'll tell me.

Bruce: TJ, send us an email with a proposal and we can discuss it at the next BOD meeting.

murf: Morning Joe

LouLou has left the room.

JoeK: Hi for NC

Bruce: Morning, Joe.  How is NC State going to do against the Seminoles today?

doughboy: Okay Bruce, also I introduced one of my Aunt's last week to Murf at our party, she has been involved a lot in fundraising's and said she would help us!

murf: I won't be glofing any time soon TJ LOL

JoeK: Not sure I am a Gator  U of F

Bruce: That is great, TJ.  Thanks

kelly: well my friends got to go bye all

murf: golfing

kelly has left the room.

LouLou entered the room.

doughboy: Murf, I'm fixing to go back to D.C. in a week or too, want to go?

murf: Take care Kelly

LouLou: Hey I got kicked off. Are you guys mad at me?

doughboy: Murf did it! LOL!

Bruce: Yes

LouLou: LOL!!

murf: OOPS

murf: LOL

doughboy: Do you want to go Murf?

murf: Wolfman - what do you think about fundraising?

wolfman: Haven't done much

murf: OK call me and we'll set something up. We fly BOTH ways!

wolfman: You can go cleaning windshields at an intersection.

Terryw entered the room.

LouLou: I wisah we could get hooked up with the celebrity poker which is on TV. I know the publicity would be good for us.

murf: Me either till I wanted someone to find a cure for this thing

Bruce: As a brief update, the KDA BOD has decided to sponsor a research grant this coming year in the amount of $50,000.  We need to raise some funds between now and then.

Terryw: Hello

doughboy: I think some how, we need to let people know about the KDA and why we are raising money and what it goes towards!  People don't know we exist unless they are friends or relatives.

Bruce: Morning, Terry

JoeK: Bruce what part of GA are you in?

murf: Morning Terry

doughboy: Hello Mr. Waite

Bruce: North ... 15 minutes south of Chattanooga

LouLou: Hi Terry. How are you?

Terryw: I am fine

JoeK: Bruce do you get to Highlands, NC area?

Bruce: Where is Highlands?

doughboy: Awareness is half the battle, but if people don't know who we are, how or why would they think about donating to us!

LouLou: How is Susanne's arm doing? Isa it healing OK?

doughboy: Gotta run, have a good day!

doughboy has left the room.

Terryw: Susanne and I have some friends that are in a band and they are talking about having a fund raiser for the KDA,  It would be multiple bands playing in a battle of the bands fundraiser to benefit the KDA.

JoeK: Bruce 2.5 hr north of alt. just off

JoeK: US 441

Terryw: Susannes arm is healed but still al little weak

murf: Sounds good and like fun Terry

Bruce: Joe, I use to go to NC quite a bit, but haven't in the last three years.  I spend a lot of time east of Ralaigh (Rocky Mount and Top Sail Island).

Terryw: Did everyone check out the Run for KDA link?  We sponsored Ed!

Bruce: Yes, we mentioned it earlier.  I liked the format and easy way to establish an account to donate.

murf: We could sponser a fishing tournament

Bruce: The confirmation process the web site uses is also nice.

Terryw: Yes

Terryw: I just thought I would stop in to see what was going on.  I have not been in the past 2 chats

Bruce: Silence is golden except when on a chat

murf: or a bake sale LOL

murf: Good to see you Terry

Terryw: we are going to head into town soon to look at a Polaris Ranger for me to get around the property on.

Bruce: Attendence on the recent chats has been fairly weak.  I wonder what is happening?

murf: A snow machine?

Bruce: What is a Polaris Ranger?

Terryw: Its a 4x4 utility vehicle like a Kawasaki Mule

Terryw: go to

Terryw: it has many uses and can get me through the mud and it can also be used to tow & groom the Arena

Terryw: Plus I can take it on the trails up here in the mountains

murf: not to metion some fun on it

Terryw: yep

LouLou: I wonder how you do what you do on the ranch. I know the horses require alot of attention. It must keep you stepping.

murf: i just got a quote on building a pool

Terryw: I fell this week straight forward and my foot buckled and my toes bent back ad touched the top of my foot. I thought I broke them

LouLou: All good men need a challenge.

murf: Last time I did that I did brake my foot!

Terryw: Yes Lou, it is very hard managing the horses

Terryw: I did not know my foot could bend that far backwards

Terryw: I was lucky

LouLou: What kind of pool Murf? Inground or above ground?

murf: inground

murf: 14 x 40

LouLou: Cool!!!

Terryw: Good for you murf

Terryw: that will be good for you

Bruce: Are you going to have a lift installed or a ramp to get in and out of the pool?

Terryw: How will you get in & out of it

Terryw: we think the same

Terryw: most the time LOL

LouLou: Make sure you have an easy exit or a ramp.

murf: now it's just getting the money together I will be able to install a lift at a later date

murf: I'm putting in very low steps at the top

Terryw: I have seen those pools that have a gentle slope in them like a beach

Terryw: with a rail

murf: bigger ones in the water and a rail

Bruce: When I swim, I can no longer use the steps or ladder.

JoeK: I have been thinking about one of those celling portable lifts.  $6K

Terryw: I can no longer get out of the water on shore at a lake very well, and not at all at the beach

murf: Not enough room for a beach entrance

JoeK: With a tract in the bath, bedroom and pool.

Bruce: Joe, I saw them advertised.  The look interesting and useful if you can no longer get up from the stool, etc.

murf: Joe can you get those portable?

murf: I saw the bathroom one

Terryw: Last time I went to the lake and tried to walk up on shore on the muddy beach I had to crawl out of the water, I musst have looked funny LOL

JoeK: That what the advertisement says

Terryw: Has anyone heard from Duane Benson

Bruce: When I began my recovery from the multiple breaks, my nephew recommended something like the lift to help with my exercise program (no fear of falling).

murf: Not fro a long time Terry

Terryw: I need to call him

Terryw: I hope he is OK

Bruce: I have to run.  We have company coming over today.  Take care everyone and stay safe and healthy.

LouLou: I can't understand why there aren't more KD'ers on the chat. I learn something each and every time we chat.

Bruce has left the room.

murf: We should do a Holiday HI to everyone

LouLou: So long Bruce.

Terryw: Murf you volunteering to make the 600+ phone calls? hehe

Terryw: Huge phone bill

murf: Me too Ron but hopefully lost of people read these when they get posted

Terryw: we can do an e-mail for the holidays

murf: I was thinking of e-mail myself

Terryw: yes

LouLou: I know alot who read but they should share comments and ideas.

Terryw: I am gonna go. Have to get ready

Terryw: talk with you alll agian soon

murf: Take care Terry

LouLou: So long Terry--stay healthy.

Terryw has left the room.

Terryw entered the room.

Terryw has left the room.

murf: ?

murf: LOL

LouLou: Hold on--Terry is changing his mind.

murf: That what I was thinking

LouLou: Any more ideas for fund rasers,

JoeK: bye

murf: Not a lot of people today but I think we had a good chat

JoeK has left the room.

murf: was it something I said?

LouLou: When is the next Dr. Chat?

murf: in two weeks

LouLou: Murf--you do a great job getting the doctors on the chat to share info with us.

murf: only took sending e-mails out

murf: I think they enjoy talking to us

LouLou: Hey Murf--soon time for the cruise---LOL---should have gone anyway.

murf: I'll have to start again next month to set up next year

murf: My secretary will be the only one going on the KDA cruise

murf: they changed the destination

LouLou: Wolfman--are you relatively mobile--can you get around without alot of help?

murf: Cozumel is not there any more

LouLou: Where to Murf?

wolfman: yes I am,

wolfman: Cozumel is wiped off the map

murf: I did recognize the places

LouLou: Do you do an exercise program every day?

murf: I have a friend with a house in Playa del Carmon and he's lost everything

wolfman: My brother does but I was told not to.

murf: I'm hoping the swiming will help

murf: or floundering

wolfman: that I would enjoy toobut none of this hard excersizing

LouLou: I guess we can face our challenges. Don't you wonder how someone with a challenge like KD would fair in a serious flood or wind storm....Bless them.

murf: Bruce had a good program he showed us in Baltimore

murf: Ron you get out two days before anyone else

wolfman: I think evrybody has to get a plan ready how to go on when a disaster strikes

LouLou: Hope they were smart enough to do so.

murf: I run when they enter the Gulf now

LouLou: You are far too close not to do so. Good luck Murf.

murf: not worth it otherwise

murf: I'm going to save the chat now

wolfman: I still walk but I found a used buggy last month that has come in handy when I have to walk greater distance, sure feels good not to have to walk so far.