Archives - 2015 and Older Transcripts
Kennedy's Disease Chat Transcript 02-05-2005
Topic: 2004 Accomplishments, 2005 The Year Ahead
Host: Susanne Waite
SusanneW entered the room.
murf: Morning Susanne
SusanneW: Good morning all!
Wolfman: I have 2 new Westie babies about 10 month old, lots of fun
murf: Wolfman are you new?
Wolfman: Morning Susanne
Wolfman: I am
murf: Where are you from?
Wolfman: Yes Susanne
SusanneW: Whats a Westie?
MICH: What's a Westie??
Wolfman: Alberta Cqanada, murf
SusanneW: Murf is from Canada originally
Wolfman: A type of dog, actually a scottish terrier
SusanneW: Ah! Thanks.
SusanneW: They are cute dogs.
murf: I came from Red Deer years ago, been in Houston for 5 years
SusanneW: MICH - I'm assuming is from MICHigan?
Wolfman: Yes especially when they are young
MICH: No I was born and raised in MICHigan but presently in Utah
Wolfman: Oh, Red Deer, just behind the hill about 100 miles away
LouLou entered the room.
SusanneW: Good morning Ron - is it cold this morning in PA?
murf: Small world! do you have KD?
murf: Morning Ron
SusanneW: We're starting to warm up out here in CA near Yosemite National Park - its 39 degrees out this morning -
LouLou: Good morning all. It is finally starting to warm up in PA.
TerryW entered the room.
murf: 46 in Houston
SusanneW: So odd for me, a native Southern Californian for 34 years to think 39 is warm! If the temp ever fell below 72 I was freezing before - but I guess we adapt.
murf: Morning Terry
LouLou: Should go to high 40's or low 50's today. Hoooooray.
murf: I start freezing at 55 now
Wolfman: minus 4 here in Alberta
SusanneW: Today, I plan to update you all a bit about the KDA - where we've come, what we're currently doing and where we are heading.
SusanneW: Wolf - brrrrrrrrrrrrr
SusanneW: I've never been in minus degree weather
Wolfman: not bad when you are used to it
murf: Wolfman that would be C so high 20's here
Wolfman: just to make it easy
SusanneW: Thanks for converting for us!
LouLou: Wolf--How does this cold affect you. Do you go out at all?
LouLou: Only uou and the polar bears.
MICH: Super...looking forward to an update as my daughter People Pc survivor made it impossible to chat for quite a while
Wolfman: LouLou, it is a dry cold and it feels okay
SusanneW: Its amazing to think the KDA is coming up on its 5 year anniversary this June. We started the process of incorporating in June 2000, were incorporated in August 2000 and obtained 501C3 status from the US IRS in November 2000.
murf: All because of you!
SusanneW: We set out to try to make a difference - I hope we have. There is so much more we want to do - but don't have the large dollars to do so- but we try to make every dollar we receive stretch and have meaning to make a difference in the World.
murf: Thanks Susanne!
LouLou: Think of all the folks you all have shared information about Kennedy's disease. GREAT!!!
kelly entered the room.
murf: Good Morning Kelly
LouLou: Hi Kelly.
kelly: good morning
SusanneW: We have over 650 people in the KDA email list - those diagnosed with KD, KD carriers, others living with KD (such as myself, a spouse or significant other, family and friends).
SusanneW: Hi Kelly - another Canadian joining us
MICH: You helped me out Immensely with your hints for going on disability
kelly: yes thank you
billeric entered the room.
kelly: my pleasure i love this chat on our kd
LouLou: Morning Bill.
SusanneW: I'm so glad to hear that the information has been helpful - when Terry was first diagnosed, we had none of the KDA's information - had to go out and find it on our own - lots of research!
SusanneW: Hi Bill - how are you and your wife?
murf: Morning Bill, good turnout today
billeric: Good Morning folks
kelly: gosh lots of snow here stormed last nite
LouLou: One of the greatest hook-ups has been our relationship with the research doctors.
Wolfman: good morning all
MICH: Good Morning from Utah
murf: Wolfman - where in Alberta?
SusanneW: We have been so fortunate to have your and everyone else's support along the way - also the researchers and doctors involved in KD that allow us to just email or call whenever we have a question. We're able to get a lot of technical questions our associates ask answered relatively quickly.
billeric: Doing o.k. Susanne. Normal aches and pains but otherwise fine.
murf: I been there
Gary_KS entered the room.
billeric: Hi MICH
SusanneW: Scary enough, I'm now starting to feel my own aches and pains... aging I suppose. (And stress!)
SusanneW: Hi Gary - another Canadian, right?
LouLou: GO EAGLES!!!!!
murf: Hi Gary
SusanneW: Bill is from Arizona some times... Minnesota others.
SusanneW: Sorry, got my Gary's Mixed up - this is Kansas Gary!
TerryW: Gary from Kansas right
Gary_KS: Good morning all.It is a nice day in Kansas this week.
SusanneW: Without the support of our associates that help volunteer, raise funds, share information and donate, we wouldn't have a KDA today.
SusanneW: Kansas - I wonder how Patrick is doing. Gary do you know Patrick?
billeric: And without you too, Susanne!
kelly: i know pat from arizona well sun city susanne
Gary_KS: No, I don't know Patrick.
FL-DON entered the room.
murf: Hi Don
LouLou: Hi Don. Welcome.
denny entered the room.
kelly: ello don
FL-DON: GM ALL
LouLou: Hi Denhny. Great turnout today.
FL-DON: beautiful here in fl. sunny and 70's
murf: Morning Denny
denny: Good morning.
billeric: Kelly, Do you live in Az.?
kelly: nope saskatchewan canada
FL-DON: what is topic 2day?
billeric: Oh. Good and bad!
kelly: but i know pat peper well he;s a good friend of mine
MICHael17860 entered the room.
kelly: he;s from arizona
SusanneW: Speaking of the KDA and its beginnings, Patrick Griffin was one of the first Board members along with Terry and I. He had also put up a very informative Web site back then and we contacted him and asked him if he'd like to work with us to get the KDA going. He agreed and sat on the board for I think 2 years. Then Annette Clipman, (LouLou's) daughter joined our board and did an awesome job heading up fundraising and recruited her sister, Anita to help! She also helped us get our first stationary and brochures printed and did a lot for our first conference in Baltimore. Sadly she could not continue on the KDA board after a year or two due to family and health. Then John Coakley Sr. joined the board and has been with us 3 years (definitely a glutton for punishment!) Joe Grimes joined us for about a year, but business committments did not allow him to continue on. Murray has also been on the board for quite some time - I think about 3 years also. Then Bruce Gaughran for 2 years now. And now Ron Wiker (LouLou) for about 6 months and most recently Paul DeSchamp has joined. We now have a KDA Board of 7 people - our maximum number of Board positions are filled.
murf: Terry - Do you think exersise helped you drop your cane?
billeric: Right, know him.
doughboy entered the room.
MICHael17860: Hi all
SusanneW: How is Pat doing - I know he had health issues last year - he had volunteered for the KDA's Conference COmmittee, but could not finish up with us due to health. He did a great job while he could!
doughboy: Hello good morning to everyone!
TerryW: Murf, I use a walking sticki on the property now but not in towns
SusanneW: It would be interesting to note where the board members are/were from:
kelly: yes he;s fine havin some problems but ok
murf: Morning TJ
FL-DON: awsome people we have been fortunate to have i think!!!
kelly: hello tj
TerryW: as for exercise I don't know. I may be a bit stronkerr in the legs but my balance is gone
billeric: I had lunch with him last week. Seems to be getting along o.k.
MICH: Dough Boy, what city are you in?
kelly: billeric u mean pat??? peper
TerryW: Hi MICHael
doughboy: Hey Murf, great lunch yesterday even though I almost made both of us fall. Hi, Kelly, Hey Murf did you ask Terry about we were wondering about?
murf: You seem to be doing better Terry, I'm getting worse
SusanneW: Terry & Susanne Waite (California), Patrick Griffin (Kansas), Annette CLipman (Pennsylvania), John Coakley, Sr (Maryland), Murray Williams (Texas), Joe Grimes (California), Bruce Gaughran (Pennsylvania, now transplanted to Georgia!), Ron Wiker (Pennsylvania), Paul DeSchamp (Maine).
billeric: Yes, Kelly
doughboy: He's getting uglier too! Just Kidding LOL//4
SusanneW: Hmmm.... Looks like we need some Western US people to represent that area! Next time when we have positions available, I hope they will step up!
TerryW: Murf thats when I am on flat land.
kelly: ok cool yup pats a nice fellow i really like him i chat with him everyday
FL-DON: where would KDA be without the internet
MICHael17860: Has anyone heard of up comming clinical trials?
kelly: yeah hey ,,,,no doubt
SusanneW: Without the Internet the KDA would/could never have existed.
FL-DON: i agree susanne
SusanneW: Its the perfect vehicle for what we needed.
TerryW: Thank Al GOre LOL
murf: I know what you mean
kelly: yes for sure sussane
TerryW: He invented it
SusanneW: It allows anyone seeking information to find it - and allows us to communicate so many ways - email, chats, the site... and now in person when we plan National and Regional events.
billeric: Your sharp today Terry
murf: Good one Terry LOL
TerryW: Always sharp
FL-DON: i remember pat's www site. where is pat now?
kelly: sun city arizona
TerryW: Susanne says I should be a comedy writer
doughboy: MICH i'm in houston
kelly: well my gp put me on CLOBAZAM just starting it
murf: TJ (doughboy) lives a few miles from me
LouLou: Terry--not only a writer but part of the duo--Laurel and Hardy.
murf: Kelly - do you think it's working?
MICH: What is CLOBAZAM?
kelly: well not quite sure yet,,, to soon to tell at this point in time
SusanneW: I think its interesting to note some of our financial information: Year End 2003 we received donations/funds in the amount of $40,112.62 - YE 2004 we grew in donations/funds received to $53,375.58 - Thank you to all who donated and raised funds for the KDA - growth of $13,000 income is wonderful and represents about a 25% increase in funds received! THANK YOU ALL! Hoping for 2005 to be even better!
murf: Let us know
kelly: its a anti confulsant for cramps and tremors and twitches
billeric: Any body else taking CLOBAZAM?
doughboy: Hey Murf, how did you like the new wheels?
SusanneW: Year-to-date 2005 - we have received $3,855.00 in donations so far! Thank you!
FL-DON: i think increase in donations show appreciation for all the good work KDA is doing, and your efforts terry, susanne and others too numerous to mention!
LouLou: Great job Susanne. We might be able to award research grants again this year.
murf: Susanne - has my company sent a check yet?
TerryW: I need to sign off this PC its now in direct sunlight and I can't see hte screen
FL-DON: close your eyes terry!!!!!!!!!!!!!!
murf: Terry - you can't see the key board either //2
kelly: wear shades terry got to be cool lol
TerryW: fingers not working well anymore
TerryW: off and on
SusanneW: We are planning as a board to fund more research grants this year... we have set aside $30,000 and hope to start another fundraising campaign for another $25,000 asking our associated to help us "match" the KDA's currently earmarked funds! That campaign will start... NOW! Please send your donations and mark your check or envelope "research" and we will make sure that that check/cashier's check/money order is 100% set aside for research only!
FL-DON: <------ brain not working here
kelly: yup me to terry i have the same problems sometimes yup
doughboy: Murf you ought to come out sunday to brother Bills house for bar b que/ poker and super bowl game, I'll give you directions if you want. Big Haliburton employee such as yourself can afford to lose a few hundred!
SusanneW: Murray - I believe we received a check from Halliburton in the last few months - nothing recently - but I have to fill out the form you sent us last week.
SusanneW: I have received your personal donations Murray -Murf has $10 a month taken out of his paycheck and the check comes regularly from his work - he's still doing the Hope5 Donation!
murf: This is when the giving choices program kicks in. They're taking it off our check now
murf: $10 from my bank, my check is much more...$1250 this year
LouLou: Good job Murf---Getting Haliburton employees to give to the KDA for research was great.
murf: Raised $3400 from Halliburton that should come throughout the year
SusanneW: Annette came up with the "Hope5" Campaign. We determined not everyone has the money to send a large donation - some do and do so and we truly appreciate it. But we thought, boy, if everyone in our database would send at least $5.00 a month - that really adds up - If you took all 650 people, that would be $39,000. But I realized each time we received a $5.00 check we had to pay .37 cents of postage, use an envelope at (.05 cents each), donation card (.05 cents)... and lots of time filling out the donation cards... we sort of let Hope 5 go by the wayside. Maybe it should be Hope10?!! That would mean if everyone participated $78,000 for the KDA! And then there are others who donate larger amounts, some every year - like our own Don in this chat today - Don may I share?
SusanneW: That is so awesome Murray!
FL-DON: rather not susanne
murf: Good idea Susanne, inflation and all
SusanneW: Ok - I won't. But I will just say we truly appreciate your and everyone's donations!
doughboy: SusanneW, I have filed for SSI last week and it will take about 3 months before I hear anything. If it goes through I thought with my extra time I'll have maybe you or someone else could give me some ideas on how I could help the K D A
murf: Funny you should ask TJ
doughboy: Why Murf?
murf: We could use a fund raiser
doughboy: Well me next week for lunch and we can discuss it!
murf: Some one in charge for national fund raising
SusanneW: We also have others like Ed Meyertholen (running races/marathons) and Erin and Tara Mills (raised funds through bakesales and supporters of them running a triathalon) who raise funds, then send us their donations. Others have helped sell KDA cookbooks - we still have more in stock if anyone would like to take this one. The Cookbook has 300 recipes from around the world that our associates sent in - and there are so many really good ones - I realized people send their favorite recipes to go into these types of books!
SusanneW: They are only $12.00 with shipping in the US - Cookbooks that is!
murf: I still have some here and coffee mugs too!
doughboy: I have been involved in raising money for the Heart Assoc. and cancer by having Casino nights, perhaps I could one for KDA
billeric: I enjoy using my mug when we have friends over. Good conversation piece.
FL-DON: casino, where!!!!!!!!!!!!!!!!!!!!! ill participate!
MICH: Is info about the mugs and cookbook and how to get them on the KD website?
SusanneW: The KDA is currently seeking a Fundraising Coordinator - we need someone who would develop a campaign idea for 2005 - in the past we've done the Hope5, Cookbook sales, Selling Holiday Cards... I saw recently one of the garden catalogs that come to us - they do fundraisers selling bulbs (Daffodils, Tulips, and so many others). I thought that might be a good idea! I've also seen pasta sales... something that could be done internationally, but easily due to our geographic challenges... something that could be divided up to volunteers to sell or buy or ????
doughboy: Hey Don, sounds like fun doesn't it. We had Holiday Inn donate us a room in Houston last time.
SusanneW: Don't Laugh - I've considered throwing a local Casino night event - you find a place large enough to hold it, hire the Casino company, get donations from local businesses and people cash in their chips to win prizes in a raffle!
SusanneW: Murray - if you have mugs and cookbooks - go out and sell them!!! : ) Hee hee!
kelly: mmmmm ok yeah sounds great!!!!!!
SusanneW: Yes - the info is on the KDA site under the KDA Store - there is an oval button that will take you there from most pages except the home page.
kelly: ok Wolfman
SusanneW: Another thought if you want to help the KDA - shop through our "Proceed Partners"... just by going to that section of the KDA Site and clicking over to web sites from there, such as Amazon.com, 1800flowers.com, giftbaskets.com, and many others, if you buy something, they know you came from the KDA site and give the KDA 5-10% of the price of the item for no additional charge to you! I always use it when buying gifts for family, friends or even clients at work!
murf: Has anyone heard form Coakley?
SusanneW: Not today.
SusanneW: We got an email from him yesterday.
doughboy: Susanne, when we held casino nights we had several local Hotels donate a room to have it in for a night, we rented the casino tables and we had volunteers to help put it on, to deal blackjack etc and got local businesses to donate things, we even had ZZ Top donate a guitar for auction, sold for a lot.
TerryW: I am back
SusanneW: That's awesome Doughboy - do you think you could put something like that together to benefit the KDA?
murf: You're Hired!
TerryW: I heard from Caokley last night
FL-DON: i talked to Pauline mengle (john's widow) a few days ago and she is doing ok. they were married 40 something years.
murf: OK as long as he's doing ok
SusanneW: It would be great if you could help others who want to do the same thing - walk them through it and act as a coach? So many want to do something like that - a golf tournament, bowl-a-thon, bocci-ball tournament... but don't know how - so they don't start... Its a daunting task, but anyone can do it really!
murf: Good to hear Don - We all miss him on the chat!
LouLou: Doughboy---You certainly have the right name----Doughboy.
doughboy: Maybe we could talk about that Murf! Yes I believe I could , my sister Louise and brother in law Charley would help me I'm sure. Let me kick it around with them and I'll let you know!
TerryW: Bruce is not here today it's his Birthday
doughboy: How's that LouLou?
FL-DON: mike and i miss john alot
SusanneW: I'm glad to hear she is doing well. Don - would you ask her if it would be ok to put up a memorial for him on the KDA site? We have a page of memorials - dont' know if she would like that. If anyone else has someone that had KD that has passed and would like a memorial on the site, just sent us their picture, birthdate and date of passing and we will post on the site.
LouLou: Tje boy to bring the DOUGH.
SusanneW: DOUGH boy: Is this Paul?
murf: TJ and I are talking about going on a diet!//2
doughboy: That's right I could sell a Billygoat an extra pair of horns, HE Ha
FL-DON: what does that entail susanne?
TerryW: Murf come here and help put up fences with me and the neighbor that will keep the weight off
SusanneW: Louise is awesome TOO! She's a little spitfire! I asked her if she would consider joining the KDA board, but she has too many commitments right now.
FL-DON: ill just go to the kda site and see for myself susanne
TerryW: I mostly watch and try not to fall down the hill
murf: I'd love to
doughboy: Yeah we had a good start yesterday, Murf//3
SusanneW: Ok - Don. Thanks. Let us know. We respect if they do not want to do it. Its available if they would like.
LouLou: The lottery is a great way to make money. You must sell 1000 tickets at $5.00 to get a profit of about $3000. Not bad.
murf: We almost both went to the pavement
SusanneW: Oh yes, Ron, I'm so sorry - Ron raised a lot of funds also for the KDA with the Lion's Club - Ron - do you want to explain what you did?
FL-DON: ill let u know susanne. ill forward her the site and let her decide
doughboy: Yeah, plus you know they just lost a daughter to cancer and she hasn't been feeling well herself, I tried to get her to join us this am but she wasn't up to it.
murf: Ron that was great...Thanks
SusanneW: I'm sorry, I am probably forgetting to mention so many who have helped us along the way raising funds.
SusanneW: We've received so many donations too over the past 5 years, large and small, from individuals, companies and even foundations.
murf: Too many to mention them all and we appriciate every $
SusanneW: Every year Todd Allen sends us $10,000. This year Alan Jinks, before he passed away, asked his company, National Transgrid Co, to send an award he'd won to us - around $14,000. We've also received many other generous donations.
LouLou: There is no such thing as a too small donation. All donations add up.
SusanneW: Todd transfers stock to us and we cash it out. He gets a nice tax deduction and avoids capital gains.
TerryW: I went into a Walmart the other day and someone slapped a sticker on me as i stood there. It said 70% off.. LOL
SusanneW: Absolutely - we get $5, $10, $25, $50, $100, $500, $1,000, $2,500, $5,000, $10,000 checks!
TerryW: bada boom
FL-DON: did anyone buy you terry?
doughboy: Hey Murf, I gotta go but lets do lunch next week, my treat, and we will talk about fund raising!
SusanneW: What are you taking about TerryW? What kind of Klonapin and Ultram are you taking this morning?
murf: ok e-mail me time and place
TerryW: I got a massage last night (feeling good)
murf: Got any more terry//2
billeric: Think I need some of Terrys stuff!
TerryW: worth the money
SusanneW: Yes, we'll put up anyone who wants to come to Foxtail WorkCamp - we have lots of tough projects to do here! Physical activity and weight loss are our daily challenge!
TerryW: I fall down I get back up
LouLou: John Coakley isn't here sooo--Terry will have to tell us the joke of the day.
doughboy: Well i'm a poor statye cop so how's blonage sandwhiches at my office? Just Kidding. I will talk to you next week. Bye everyone and have a great Day!
SusanneW: We splurged last night and had a massage therapist come to the house - that was great! No noise from the room next door like in a salon or spa. And didn't have to go anywhere when done -just melt away to sleeP!
SusanneW: Take care Doughboy!
murf: Take care TJ
TerryW: the only problem is I fall under the horses feet. they have not stomped on me yet
SusanneW: Ah - Doughboy not Paul - TJ!
TerryW: I have been lucky
SusanneW: TW: Thank God!
doughboy: Bye Ya'll!//1
TerryW: bye dough
SusanneW: Ok - you chat - I will go back to KDA stuff!
doughboy has left the room.
kelly: you horseback ride terry???
LouLou: So long--Stay healthy.
FL-DON: gotta go here, bye ya'll
Wolfman: bye DB
FL-DON: god b with u
murf: Take care Don
TerryW: I will today Kell. I have not in 6 months
FL-DON has left the room.
kelly: wow thats awsome stuff terry
FL-DON entered the room.
FL-DON has left the room.
LouLou: Good chat. Any more information you can share with us Susanne or Terry?
FL-DON entered the room.
TerryW: Last time i rode it jarred loose a kidney stone and I had to go to emergency
SusanneW: Geting ready to send out 9,700 mailers next week to all Neurologists in the US - this is for real now - we have a mail/fulfillment house on the job/hired! Three KDA brochures and a letter to the doctor will go out in a KDA envelope.
murf: Don - you don't want to go do you?
FL-DON: dy swam, just finished chat, next 2pm performing arts (Hairspray) then dinner
FL-DON has left the room.
kelly: be careful terry esp.. when riding
FL-DON entered the room.
SusanneW: The KDA envelope will have a "teaser" that states: "Please Read: Mistaken Identity? ALS (Lou Gehrig's Disease) & SBMA (Kennedy's Disease)
FL-DON has left the room.
TerryW: Kelly I now wear a back brace to support my stomach and back from bouncing around so much and helps me keep my posture when riding
kelly: susanns u should send me the ifo and ill give it to the neurologistd here sask
SusanneW: Hopefully the letters will be opened and read and brochures will help educate the doctors, but also be given to any KD patients they may be seeing/diagnosing that haven't found us on the Web yet or don't have Web/Internet access
billeric: That's neat Susanne.
TerryW: Kelly I only walk the horse
kelly: oh ok terry good thing
LouLou: Glad to see this information being shared with doctors and researchers. WEay to go Waites.
SusanneW: That would be great Kelly - email me afterwards and I'd be happy to mail you brochures and the letter - in fact anyone who would like to do that - email us and we'll send to you.. if you are outside the US - because alL US Neurologists are getting the mailer (other than child neurologists and neurosurgeons.)
billeric has left the room.
SusanneW: Way to Go KDA - without the donations, we wouldn't be able to afford to do this!
billeric entered the room.
kelly: ok sussane good stuff because the neurologist;s dont know much about kd here in saskatchewan thanks
billeric has left the room.
TerryW: Good work susanne on getting that mailer done
Wolfman: Could you include me too, SusanneW
SusanneW: I'm so glad to finally be getting this mailer out - we've been meaning to for over 2 years, but work, life, moving, other KDA priorities has prevented me from having the time to focus and get it done!
murf: Well done Susanne!
kelly: ok sussanne will do that asap
MICH: Speaking of ALS and KD mix ups... the ALS clinic here is called the ALS and Motor Neuron Disease clinic... so it kind of infers that they are exploring KD too!
SusanneW: Another item we are working on is what else, KDA tax returns - coming up again... but also now the IRS Determination forms. After 5 years of a "probationary" time, the IRS must look over all our books/financials and make sure we still qualify as a 501C3 - we are working with our CPA to make sure they get completed in time and returned to the IRS. We don't want any mistakes made!
SusanneW: Yes, KD is a lower motor neurone disease also - glad they are including other diseases!
LouLou: Great chat today. I must go for now. Stay healthy and safe till next we chat.Good bye.
LouLou has left the room.
murf: Byr Ron take care
SusanneW: We've been so fortunate to fund two $25,000 research grants also in the last 2 years - Dr Andy Leiberman and Dr. Paul Taylor. We certainly look forward to funding more!
murf: Or giving them more to continue
SusanneW: How do you all like the new "Newsletter" format from the KDA with all information saved up and written in one newsletter - rather than announcements all the time when something was to come up? Which do you prefer? More timely emails (but are there too many of them?) or the Newsletter format?
SusanneW: Newsletter format every now and then?
Wolfman: good chat, have to go, thanks for contacting, Susanne, see you next time.
SusanneW: By Wolfman.
murf: Take care Wolfman
SusanneW: What more can the KDA do for yoU?
kelly: by wolman
SusanneW: What would you like to see?
Wolfman: talk to you,Kelly
kelly: ok Wolfman yup
kelly: suassanne what tv ads on kd and such is that possible???
SusanneW: Well. anything is possible - with lots of money!
kelly: oh ok
kelly: there is lots of tv ads on ms and als and muscle dystrophy ???? they must have alot of cash i guess
denny: The newsletter format is great.
SusanneW: We'd like to do a letter writing campaign to People Magazine... they didn't respond the way we would have liked when Bruce, one of our board members, emialed them about the possiblity of doing a story on KD - its a public interest story - especially when tied to the mistaken diagnosis of Lou Gehrigs - many people could be thinking they have ALS when really it might be KD if they'd run a KD blood test... if we all (all KD associates) emailed them everyday and bombarded them - letting them know we count, we are important and thing a story on KD is important, we might get a response and an article! Would you guys be willing to do that?
murf: MDA gets millions a yr in donations
SusanneW: That they do - lots of $$$$
kelly: yeah i suppose so yup
SusanneW: Thanks Denny - we need the feedback - we don't know if we don't hear from you guys!
TerryW: Bye all
MICHael17860: Has anyone heard of the University of Wisconsin doing stem cell research on lower neurone disease?
kelly: bye terry take care now
MICH: Is People mag at peoplemag dot com??
TerryW has left the room.
murf: Take care Terry watch out for the houses
denny: Thanks for all you do.
murf: MICHael - do tell
SusanneW: I am not following stem cell research closely and the KDA is not in contact with any researchers in that regard. I'm sure the KD researchers probably are. We actually were asked not too long ago if we would be able to accept stemcells from a KD embryo... Unfortunately, due to the controversy it might have caused our board had to decline that offer. But we put that person in touch with our researchers.
SusanneW: However, the KDA has accepted KD donor tissues and may continue to do so in the future. IF anyone is interested in being a future donor, you will want to contact Bruce Gaughran of the KDA board of directors.
MICHael17860: It was on our news station the other night, I went to the University web site. some good information there.
denny has left the room.
denny entered the room.
SusanneW: I'm not sure about the People magazine web address - but if we had enough people who want to do this, I can draft a "sample" email - you can tailor it to how you would like, write your own or use the sample, but we could all email and email and email and email and hopefully get a positive response! Coudl do the same at Oprah or other public media vehicle to help get the word out for free. You could call your local paper and see if they are interested in doing a public interest story about yourself. Terry did that where we used to live. I can't recall his name, bad... Bruce's Brother and neice, did the same when they raised funds for the KDA in a Texas canoe race... Ed Meyertholen has even been on the local TV News and in the paper for his running marathons - all of that helps get the word out about KD!
murf: All please think about a get together this year some where
SusanneW: I was going to ask Murray - do you have a location decided? We have to do that before you can move forward!
SusanneW: Orlando area? New Orleans?
SusanneW: How about Yosemite National Park!
SusanneW: We have 5 acres and could have trailers, motorhomes, tents pitched around!
SusanneW: There is also a Casino here for Don only 5 minutes away!
SusanneW: Hotels, motels that are affordable.
murf: I need others to help too many suggestions
SusanneW: I like the idea of Yosemite!
Gary_KS has left the room.
SusanneW: Murray I think you will confuse things if you get too many suggestions - I think we just need to pick a place and go with it! If you build it, they will come!
SusanneW: A cruise is also a possibility- maybe a 3 or 4 day to keep expenses dowN?
murf: ok Gary didn't like your suggestion
SusanneW: ThankS Murf - I think I'll go get a tissue now...
murf: I do!
kelly: i do to susanne
kelly: cheer up
murf: //5 sorry
SusanneW: Whatever is fine - but I think we need to determine the location soon, so we can get hotel space reserved and start to let our members know about it - some would have to start saving now to go - including me!
murf: Where is the nearest airpoirt?
SusanneW: Fresno - 35 minutes from our place - about an hour from Yosemite.
denny has left the room.
SusanneW: I suppose we start to digress... Its about time to wrap this up~!
kelly: well folks got to go you all, take care and prosper,, well ok bye all
murf: Ok I'll send an e-mail to the board and we'll deside
SusanneW: Thanks all! We appreciate your support!
MICHael17860: By all
kelly has left the room.
SusanneW: Take care
MICH: Great to talk to you all... glad I finally got my daughters computer working... after PC People wouldn't get thru to the chat group for several months... Yosemite sounds great... but may need to win the lottery first?
MICHael17860 has left the room.
murf: Bye ya'll Take care till next time
murf has left the room.
SusanneW: We want to try to figure out a nice venue for a "vacation" type meeting this year - to get together with KD'rs and have some fun - rather than a 2 or 3 day conference format this time! Maybe the researchers would give us a presentation , but that's about it for this year - more like a family of KD'rs on vacation!