Our Focus Remains on Research, Education and Support
The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.
Will my child be born with this DNA defect?
It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.
Kennedy’s Disease Knows No Boundaries...
It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.
What is Kennedy's Disease?
Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.
| 2006 - May 20, Open Forum |
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Kennedy's Disease Chat Transcript 05-20-2006 Topic: Open Forum Host: Terry Waite Chat Participants: MurfJACK Bruce SEAN TerryW Dart! craig_h MICH kellyc Duane Michael17860 butch emeyerth PA-Paul DarwynP BEGIN CHAT
Murf: morning Mich MICH: Good Morning Murf Murf: How's your weather? MICH: We're going up to 88 today... wormer than usual, how about Texas? TerryW entered the room. Murf: 75 now but going to 92. I can't wait til summer Murf is currently away. TerryW: Hello Murf: Morning Terry TerryW: Just woke up 5 min ago MICH: Morning Terry, hows the weather in California? TerryW: Nice today Murf: I'm currently away I guess? TerryW: been hot near 100's for the past 2 weeks Murf: I wonder what that is about? MICH: The hot weather seems to make my feet go numb and tingly even faster Murf: I would think it should be crisp mountain air LOL TerryW: seems to think you're idle TerryW: Hot weather helps my feet & hands Murf: o well, as long as you can see me Bruce entered the room. Bruce: Good Morning Murf: Morning Bruce JACK entered the room. MICH: Howis the weather in Georgia? Murf: Morning Jack Bruce: Warm today. It is supposed to be 83. JACK: GOOD MORNING TerryW: hi Jack no pun intended Murf: Jack - are you new? JACK: NONE TAKEN MICH: Did Rhode Island get alot of rain? JACK: A LOT OF FLOODING JACK: BUT NOT ME THANK GOD TerryW: that's good JACK: WHAT TIM DOES THE FORM START Bruce: As some of you know, I have been putting together an exercise guide for men with KD. I have sent the draft off to three neurologists for their review. Linton Hopkins, my doctor, responded with the following addition to a paragraph on the benefits of exercise and stretching. Bruce: • Cell inhibition is what happens when an activity just started, such as an exercise (or an acupuncture needle or back scratch or massage), temporarily blocks an unpleasant sensation like a chronic pain. The nerve transmits the pain signal to a cell in the spinal cord which is inhibited by the new "traffic" caused by the new stimulus. It's why pinching the cheek blocks the pain from the anesthesia needle in dentistry, and why rubbing a child's wasp bite helps the pain. • Exercise and stretching (working the muscles and joints) produces stimuli for the spinal cord and brain (central nervous system), which is one reason we feel better when we move. TerryW: hi Bruce I did not see you come in. Bruce: Hello PA-PAUL entered the room. Murf: Jack - officially in 5 minutes JACK: THANK YOU TerryW: hi Paul PA-PAUL: hi terry Murf: Morning Paul PA-PAUL: hello all Bruce: Unfortunately, I have to go in a couple of minutes. I'll be back for the board meeting. TerryW: ok Murf: That's a great idea Bruce. I could use some Bruce: Anyway, I thought this insight into Cell Inhibition was a good addition to the guide. It explains why we often feel better during and immediately after exercising and stretching. Murf: Everything ok Bruce? kellyC_ entered the room. Bruce: Doing well, thanks. How about you? Murf: I'm ok too Murf: Morning Kelly kellyC_: good morning all PA-PAUL: who feels better after exercise TerryW: Good morning TerryW: I feel sore TerryW: after exercise Murf: I know what you mean Paul. I hurt! TerryW: I guess I am doing too much kellyC_: didn't sleep at all last night myself.... Bruce: Paul, I was just explaining something my neurologist told me about a side benefit of exercise called cell inhibition. PA-PAUL: I feel I will drop after I walk from from of house to the back DarwynP entered the room. Murf: What's that Bruce? TerryW: OK I guess we can officially start the chat session now TerryW: Anyone have any topic that they want to talk about Bruce: I'll send it again because some of you might have missed it. • Cell inhibition is what happens when an activity just started, such as an exercise (or an acupuncture needle or back scratch or massage), temporarily blocks an unpleasant sensation like a chronic pain. The nerve transmits the pain signal to a cell in the spinal cord which is inhibited by the new "traffic" caused by the new stimulus. It's why pinching the cheek blocks the pain from the anesthesia needle in dentistry, and why rubbing a child's wasp bite helps the pain. • Exercise and stretching (working the muscles and joints) produces stimuli for the spinal cord and brain (central nervous system), which is one reason we feel better when we move. PA-PAUL: is there an article on it we can read Bruce SEAN entered the room. kellyC_: LOL. TerryW: Hi Sean PA-PAUL: ok SEAN: HEY GUYS Murf: Good info Bruce TerryW: yes Bruce Bruce: Not that I am aware of, Paul. I am certain I can find more on the internet about it, however. It will be part of my "Smart" Exercise Guide for Men with KD. Murf: Hi Sean craig_h entered the room. Murf: Morning Craig craig_h: good morning Murf: Good turnout today Bruce: I am not certain why the message appeared twice. Interesting??? PA-PAUL: sounds good Bruce TerryW: that is strange SEAN: I found out that I was accepted for the study. she gave me the dates and times have any of you guys found anything out Murf: Earlier it said I was away Bruce: The guide will be designed for 'old farts' like me. TerryW: Did anyone have any problems getting into chat today PA-PAUL: no kellyC_: nope not me DarwynP: No got in first crack SEAN: no TerryW: good MICH: NO craig_h: I'm going up there soon Bruce: Terry, I think you solved the problem. kellyC_: hey Sean when do u go to NIH then? TerryW: I hope so Murf: Much easier to login. no one should have problems now. Thank you Terry TerryW: your welcome Murf: I go June 20 & 21st Bruce: Okay, I have to run. I'll talk with you shortly. Bye Murf: When do you go Sean? craig_h: <--- May 31 & June 1 Bruce has left the room. Murf: Late Bruce Murf: Later Duane entered the room. Murf: Craig Have you ever been to NIH? TerryW: Hello Duane Duane: Good morning all craig_h: nope, never been DarwynP: I go Oct. 11and 12 Murf: Morning Duane Murf: It's a big place Duane: hello, is everyone signed up with NIH? SEAN: I left my dates at home but I go in June 2006 December 2006 June 2007 december2007 June 2008 Butch entered the room. craig_h: I've heard, a guy that I work with takes his daughter there Murf: Darwyn - Where in Man are you from? DarwynP: Churchill for now. kellyC_: ???? I never heard nothing yet ? from NIH. still waiting for there phone call DarwynP: I was Radionet last week TerryW: Oh ok Darwyn Murf: ok I remember LOL SEAN: they said they would give 1/2 the people the test drug and 1/2 the people sugar pills DarwynP: Changed as wasn't working for me Murf: Glade you got on Murf: Glad craig_h: kellyc, do they have all your info? They wouldn't send letter until they got genetic test for me kellyC_: how old are you Darwyn? if u don't mind me asking? JACK: I GO IN SEPT DarwynP: Kelly did you get the letter kellyC_: yup they do all faxed over there 3 weeks ago DarwynP: I turned 40 in Oct. SEAN: I am excited about this even if I am one of the people that just gets the sugar pill. I think it will help all of us in the long run Butch: Good morning men. Had a little trouble getting onto chat. For whatever reason it went back to my old chat log-in info. doughboy entered the room. craig_h: I'm allergic to placebo Murf: Me too0 Sean kellyC_: ok kellyC_: ty dawyn Murf: Craig - me too//1 //2 Butch: Butch is still Ron PA. doughboy: morning everyone Butch: Hi TJ. Michael17860 entered the room. craig_h: placebo makes me weak, increases chance of falling down ................. maybe I'm already on placebo !!! Murf: Wow everyone is new Murf: Hi TJ MICH: Doughboy, what city are you in? Michael17860: Hello all doughboy: nice 2 c new participation - Waller Texas 40 miles west of Houston doughboy: I live close to Murf Murf: How you feeling TJ? PA-PAUL: I guess we are not going to pull off a conference this year ??? Butch: Did any of you get your dates for the NIH clinical trial? I am going down on June 5 and 6. Murf: Paul - Oct 11th to 13th in Atlanta doughboy: bad - all day yesterday my left arm was completely numb - today the same but also add my 2 legs craig_h: may 31 & June 1 here PA-PAUL: thank you murf doughboy: Mine is Oct. 23rd and 24th Duane: August 29 and 30th SEAN: I did Butch they gave me my schedule for the next 2 years craig_h: I guess first participants are this Monday DarwynP: Kelly I got my letter from Allison on May 9 and called back on the 11th and booked Murf: If we threw you in the water TJ, we could call you BOB doughboy: is anyone else besides me experiencing numbness? SEAN: yes Allison is who I spoke with Duane: yes, mine comes and goes kellyC_: ????? h'mmmm I phoned Alison 2 weeks ago and left a message on her voice mail to call me? and she never yet o-well I guess its not meant to be ? lol doughboy: How long does it last Duane Michael17860: doughboy, yes in my fingers Murf: I do all the time in my hands and arms Duane: days TerryW: I have numbness in hand and feet when its cold craig_h: kelly, it's easiest to email Alison DarwynP: Try calling again MICH: I get numbness in the feet during nite, and in early morning including calves Murf: Kelly - she'll get to you hang in there Butch: We have had very cold and damp weather in PA. It has been taking its toll on my legs and arms. Very sore. kellyC_: yah i guess so SEAN: shoulders and legs have numbness DarwynP: squeeky wheel gets grease doughboy: I mean it's like my arms feel dead is that normal? I called my neurologist yesterday and he said get used to it craig_h: Alsison has been great returning emails DarwynP: lol DarwynP: thats right craig SEAN: she is a very professional and courteous lady doughboy: Amen to that Craig, she responds quickly Murf: Butch - Thats why I moved south LOL kellyC_: well a friend of mine from arizona says they'll get there 50 men with kd lol guess i just have to be patient lol Duane: my left arm is useless most of the time. just dangles DarwynP: she's always a pleasure craig_h: I'm taking that woman a dozen roses, wonder if she like red or yellow?? lol Duane: don't forget to remove the thorns :) doughboy: So what do you do Duane how do you function SEAN: whatever the color you cannot go wrong with roses and a lady craig_h: right security might not let thorns in !! doughboy: Knowing Alison, I'll bet she'd love yellow Michael17860: does anyone take DHEA/ PA-PAUL: not me doughboy: whats that Murf: Nope DarwynP: I take nothing at all, what is DHEA SEAN: my wife is going with me is anybody else taking a friend or wife Duane: very carefully. Mostly rely on others to help out with yardwork, anything that requires the use of both arms. can't raise mine over my head. makes doing laundry, especially folding clothes very difficult. Butch: Glad to see with all the complications of Kennedys that you guys haven't los your sense of humor. doughboy: I only take 600mg tablets of Neurontin craig_h: both of my parents want to ride up with me DarwynP: My wife is coming Michael17860: DEHYDROEPIANDROSTERONE. ITS A PRECURSOR TO TESTOSTERONE doughboy: My sister Kathy is going with me if my wife can't, DarwynP: Thats a mouthfull lol craig_h: is kathy cute and single ??? //2 Dutch entered the room. Murf: Michael - is that ok with the study? Butch: Sean0--I am taking my wife, Mary Lou for the tests. doughboy: you can't take testosterone according to Dr. Chen, I have some because my testosterone level is only 150 Duane: I'm taking my brother. He doesn't understand the disease. seems to think if I do more I'll strengthen muscles. My doctors are concerned with weight loss. from onset I weighed 182 now weigh 165, losing muscles. Murf: Morning Dutch - long time Dart! entered the room. SEAN: i have been going to see an orthepedic surgeon about my shoulder he is scheduled an mri and my have to do surgey. do you think my shoulder could be caused by my kennedys doughboy: Nah she is married 35 yrs now craig_h: ratz craig_h: lol Murf: Morning Dart Duane: yes your shoulders aree affected. I have constant neck shoulder and arm pain Michael17860: I do not know due to the fact that I am already taking avodart. doughboy: yes Sean DarwynP: I don't think this is a dating service boys. Otherwise I have a couple of old Aunts I could line you up with. craig_h: isn't avodart actually dutasteide ? SEAN: only one of my shoulders are hurting anytime i raise my arm even just a little bit Duane: LOL kellyC_: LOL..... Murf: Numbers Darwyn!!! craig_h: lol Darwyn Murf: LOL kellyC_: //2 Dart!: Sorry, and good morning All. Can you imagine, I forgot. You will have to say it all again, I reckon. doughboy: Hey Kelly, TJ here, if you don't get in the study and really want too, maybe I'll sell you my spot. LOL,//4 Michael17860: yes it is DarwynP: 70. Years that is not number of!\ kellyC_: sure why not LOL.....//2 Murf: Where are you going TJ? DarwynP: Kelly. Your from Saskatoon? doughboy: what do you mean Murf Murf: No selling your spot kellyC_: I'am drinking coffee as we speak and when I swallow it... it comes out of my NOSE? kd muscles in my throat are wasting to darn fast doughboy: Oh to Keelly for the study kellyC_: yes saskatoon yup kellyC_: sask Murf: I do that some time Kelly Butch: Strange you guys talking about your shoulders. I have been having alot of pain with my right shoulder. I assumed it was bursidas. It hjas been waking me up at night. DarwynP: I'm originally from Kinistino kellyC_: really? small world hey SEAN: hey guys i am going to have to go back to work Saturday is the biggest day of the week. good luck to everyone in the next couple of weeks . talk with you guys soon. doughboy: How are you doing Terry Murf: It's that flap in back of your mouth DarwynP: Still lots of relatives in the PA, Melfort and in between areas Duane: I've found myself doing the "chin tuck" when swallowing...really is a challenge sometimes. Especially when I get tired. MICH: My first neurologist seemed to think shoulder shruggs were a good exercise...but after 15 years of KD symptoms it's hard at times to even put my coat on kellyC_: oh ok is it curable? murf Butch: Nice to see so many on the chat today. Alot of interest in the upcoming test at NIH. doughboy: Yeah my throat muscles are not good either, have thought about going to John Hoskins for the ballon treatment to stretch the muscles there kellyC_: ic ic darwyn, yeah i have alot of cousins in prince albert to Murf: As soon as they find a cure for KD....yes Murf: The muscle is not staying up any more kellyC_: oh ok ty.... murf DarwynP: My mother had the balloon treatment and seemed to help doughboy: really, that's good 2 know craig_h: luckily for me NIH is only about a 4-1/2 drive kellyC_: I went for a throat assemnet the docters say its all ok???? SEAN has left the room. doughboy: really, 21 hours for me Murf: 2 hr flight for me Murf: you too TJ doughboy: 2 hrs and 45 min Murf DarwynP: Were still waiting for her to test for KD carrier. Could be a sign of symptom craig_h: 21 hours? you'd get slayed in gas prices , lol kellyC_: yup my mom has kd sytoms to Murf: whos counting LOL doughboy: I love 2 fly, ain't that right Murf DarwynP: She falls lots DarwynP: She's 59 Murf: right LOL Murf: Interesting Darwyn doughboy: Well since NIH is paying for flights, taxi's rooms and meals I'm all right with the cost kellyC_: oh ok. darwyn.. yeah my mom is 63 she has lotsa muscle spams etc.. Murf: NIH will be very interested in this info doughboy: Terry are you going for the study? DarwynP: I think more women show symptoms that is speculated? Murf: could be right Butch: Terry, How are you doing? Haven't talked to you lately. Hope all is well with you and Susanne. DarwynP: Airfare from here is 1400 just to Winnipeg Man. Murf: I hope this thing is not mutating //10 doughboy: Murf could you come over 2 day and mow my grass?//2 doughboy: NIH pays for it Darwyn DarwynP: Thank G. doughboy: Is Terry online? Butch: Hey guys--TJ is selling "grass". PA-PAUL: he was craig_h: is that medicinal grass? doughboy: He has not answered the last 4 or 5 questions 2 him PA-PAUL: he fell asleep Murf: may be Butch: Craig--Not sure. craig_h: lol doughboy: Yeah I got lots of grass for sell, tell them where I just retired from Murf kellyC_: Darwyn,, if you want,, check out my story on the kd web page,,, since that ur canadain lol.. Michael17860: Hi Paul will you be making it up to knobels this year? Murf: Terry is on the phone with Bud Butch: We know from whence you came TJ. doughboy: Wake up Terry DarwynP: I did Kelly was very interesting. Was why I asked if you from Saskatoon? PA-PAUL: hi Michael i really want to but only God knows when.. kellyC_: oh ok cool ty daryn craig_h: the Gov. of Virginia just called out 3/4 of the Virginia Guard to protect the border ........ need to keep them pasky West Virginian's where they belong ....... doughboy: Yeah Butch I got lots of free grass//6 Michael17860: If you do make sure you give me a call. PA-PAUL: i promise i will maybe soon. is your email still same Butch: Michael17860--Where do you live? Murf: Terry is trying to help Bud Goodnight get loged in to chat Michael17860: yes it is kellyC_: who is bud murf? doughboy: I think they ought to have a Suvivor show with only KD guys on it, could you set that up for us Murf Michael17860: Paxinos Pa DarwynP: I'm just wainting for my employer to make a decision on moving me to Brandon to an inside job. I can barely do my telephone install job now. Murf: Bud Goodnight is the guy that owns a few KFC restaurants kellyC_: ic ic oh.... doughboy: Hell Darwyn go ahead and retire like I did craig_h: KFC ?? I like that guy already Butch: Michael--I live in Lancaster, PA. Duane: yes retire while you can still do things kellyC_: yup I.am fully retired now LOL doughboy: Hey Kelly in Canada do you get a big disability check every month Duane: November 05 I left work on medical retirement. should've done it sooner! Butch: Is that retired or retarded....I am more retired than retired. LOL Michael17860: Butch did you ever here of Knoebels Grove in Elysburg PA ? doughboy: I went in Sept. Duane kellyC_: yeah not to bad doughboy but i owe taxes alot LOL Butch: Yes! Duane: Just removing the stress from work has helped out. Michael17860: Well I live 2 miles from there. doughboy: To hell with them Kelly, what they gonna do shoot you DarwynP: I'm only 40. Disability is onlty 70 %. I got one girl starting University this fall and the other next. Duane: Now the stress is "what can I do without falling down Duane: ;) kellyC_: they garnished a portion of my dissability check them jerks Murf: Kelly - Check with your provincial gov. Taxes is sometimes less for the handicapped Murf: It is here doughboy: I doubt it will get better Darwyn Butch: We will have to get together, you, Paul and myself. DarwynP: Can't see that option being viable. Michael17860: Let me know when and where. doughboy: That really sucks Kelly PA-PAUL: pick a date time and place kellyC_: yah I has appley for diss tax credit and got turned down//10 DarwynP: If I have too I definately will go though! doughboy: why Kelly Duane: disability tax credit ? how does that work? kellyC_: ?????? i dunno? Murf: Do it again! doughboy: are you not 100% disabled? DarwynP: That rediculous Kelly!!! kellyC_: i guess so ? i dunno kellyC_: well that the canadin gov for u doughboy: Keep on applying - you may have 2 get a lawyer TerryW has left the room. kellyC_: i make to much i guess Murf: They probably do that to everyone the first time doughboy: r you still working? MICH: Michael17860...with your Icon with the hat...are you in the same profession as Doughboy? kellyC_: yah i will ty i owe about 10 grand they take off of my pension leaves me poor doughboy: hell nothing else file bankruptcy, write it off and then they can't garnish your disability TerryW entered the room. Michael17860: I was a corrections officer for 19 years for the state of PA kellyC_: they dont take tax's off on bankrupcy anymore here in canada TerryW: sorry I was away Murf: Canadian Law is a little bit different TJ kellyC_: or student loans etc doughboy: Oh, too bad, damn Murf I knew there was something wrong with Canada besides the weather kellyC_: JERKS canadian gov... Murf: Hows Bud doing Terry? doughboy: Hi, Terry how are you DarwynP: Yeah! Canadian Gov gets your coming and going. BATARDs DarwynP: lol PA-PAUL: by all until another time TerryW: I am fine, been really busy Murf: They're all the same Kelly PA-PAUL has left the room. kellyC_: yup..... doughboy: what - riding your horses Butch: So long Paul--stay healthy. DarwynP: Maybe us KD canadians need to get together and try lobby them somehow? doughboy: I'd say so Darwyn doughboy: That's just not right kellyC_: yah good idea darwyn,,, yup as for me Iam so brain dead in the taxes etc i dont have any schooling or education Michael17860: Butch, get with Paul and he can let me know where and when we can get togther for lunch. Duane: got to run, i mean waddle. take care all. Butch: Great-- After my visit to NIH. OK! doughboy: bye kellyC_: LOL by duanne Duane has left the room. Murf: Take care Duane Butch: So long Duane--stay healthy. Michael17860: sounds like a plan. DarwynP: We'll run on the KD ticket. Too tired to SCREW YA. so we'll be with YA!!! LOL doughboy: Hey Murf I think I'm ready for that big steak you promised me for my 50th b day kellyC_: WELL all of my Kd friends got to go now see ya next chat session by alll......... Murf: I see your feeling better...LOL DarwynP: BYE kellyC_ has left the room. doughboy: NO but what the heck doughboy: bye kelly Murf: Give me a call when you feel like lunch next week doughboy: Terry r u participating in the KD study Butch: Must go for now. Stay healthy till next we chat. Bye. craig_h: well, ya'll take care ..... Butch has left the room. DarwynP: bye butch doughboy: Bye Butch - sure will Murf doughboy: you goin 2 Craig craig_h: guess so, house not gonna clean it self doughboy: call a maid Michael17860: Terry are you going to the clinical trial at NIH ? Murf: I have a tough time cleaning doughboy: treat yourself doughboy: get married ya'll craig_h: as long as it isn't knee level or below, I can clean .... lol DarwynP: It sure feels good to chat with you'se. TY to all the organizers of this site!! craig_h: doughboy, you sound like my mother now !!!! doughboy: We like it 2 Darwyn doughboy: How old r u Murf: I need to but one of those robot vacume cleaners DarwynP: 40 doughboy: Never 2 late Dart!: It has been a 'slice' being with you again, Folks, but I have a housefull of Saskatoon relatives, so I had best go to get them ready for the day. TerryW: Sorry Michael I was away from the keyboard. No I am not a participant doughboy: Bye craig_h has left the room. DarwynP: Bye Murf: Dart Have a good day Dart! has left the room. Michael17860: does anyone know if they have the 50 people they need?> doughboy: When I talked to Alison this past week they were getting close MICH: Is there anyone besides me and Terry not in the study? doughboy: Your not going either Mitch Michael17860: I am not, due to the fact I am on avodart. JACK has left the room. TerryW: I could not handle all the travel back & forth doughboy: oh avodart is one of the no no drugs for the study doughboy: Terry have you been getting weaker my friend TerryW: I need to log off everyone. Have a good day Michael17860: avodart is the drug in the study Murf: That will be tough on me too but I'll do it doughboy: Are you going to try and go to the conference? TerryW: DOughboy yes my stomach muscles doughboy: SAorry TerryW: I don't think I will be attending this year DarwynP: With my pension plan, have to be min. 55 to be eligable. Proving 15 yares of disability could be a major pain! TerryW: :( Murf: I got too many of those LOL doughboy: I wanted to meet you TerryW: bye all TerryW has left the room. Murf: Take care Dutch: I plan to attend the conf. doughboy: I thought Terry was hosting this chat? Murf: Great Dutch - You'll have a good time doughboy: Look forward to meeting you Dutch Michael17860: it sounds like Terry is not doing well. doughboy: I agree mike Murf: He was off helping anothe KD'er Bud DarwynP: Alison said the conference is at the same time I go to NIH is that true? doughboy: Depends on your date at NIH Murf: The conference is October 11th to 13th DarwynP: Yes then, my date is the 11 and 12th doughboy: call her and change it Murf: It will be tough to be at NIH and Atlanta at the same time LOL doughboy: not if they clone him Murf: Off to save the chat END CHAT |
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