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.
| 2007 - October 20, Open Forum |
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Kennedy's Disease Chat Transcript 10-20-2007 Topic: Open Topic Host: Bruce Gaughran BEGIN CHAT Bruce: Morning Eric Bruce: How are you today? MICH: Pretty good, how's the weather in Georgia? Bruce: Fall finally arrived yesterday and it is beautiful. Bruce: I just returned from walking my dog down by the lake (actually, he walks and I ride the golf cart). MICH: I want to thank you again for helping me a few years ago deal with delaying doing Medicare prescriptions since I have my wifes insurance. I forgot what kind of dog do you have? Bruce: How is work going? I think it would be interesting to have job at a planatarium. MICH: I've been working there for about 5 years now just in the morning... it becomes more and more as a physical challenge as does typing this info. Bruce: My dog's name is Fred. He is a beagle. He showed up on our porch four years ago and was about dead. MikeG entered the room. Bruce: Morning Mike MikeG: Hi Bruce Bruce: How are you today? MikeG: fair - we had a MDA fundraiser we attended last night - too much wine! MICH: How are things at Tropicana? MikeG: it was a art auction - we got a nice piece for a goos price. Bruce: Are you into art, or just helping the cause? MikeG: Tropicana? I haven't contracted there in quite some time. They're probably doing ok. MICH: Mike and Bruce, being a state away from each other, have you had a chance to meet? MikeG: just helping... Bruce: Did Terry send out a notice of the chat? I don't remember seeing one. norminstormin entered the room. MikeG: I thought he did - I'll check. Bruce: Morning Normin norminstormin: hello Bruce: Are you all set for winter? norminstormin: getting ready Bruce: It has been a few years since I was in Ontario. We used to have a paper mill up there. MikeG: actuall, I don't see the reminder for this one - Oct 6th is the last I see... MICH: Normin... are you very far from Detroit? norminstormin: where in ontario Bruce: Everything was sold last year to Domtar, however including the mill. Ed_M entered the room. Bruce: I just blanked. I had Prince Albert (another mill) on my mind and can't come up with the name. Bruce: Morning, Ed Ed_M: Good Morning, everyone MikeG: Hi Ed norminstormin: north of minnesota Bruce: I used to fish the Lake of the Woods region when I was young. We would canoe in for a week to ten days. A great place ... I miss those days. Bruce: Walleyes and Northerns for breakfast - lunch - and dinner almost every day. WOW! Was that living. norminstormin: thats nice i used to do that when i was younger too MICH: Normin... I'm bad at geography... are you far from Georgian Bay? norminstormin: north of thunder bay Bruce: People in the south don't know about Walleyes. I tell them they are missing a great game and eating fish. norminstormin: yes they are missing out MikeG: with my hands I couldn't even get a hook out now... Bruce: Well, what does someone want to chat about today? norminstormin: mine are getting like that now Bruce: Hands ... yes, those good ole hands that don't work well anytime, but really don't work when it is cold outside. MikeG: that's why I'm so far south... Bruce: Any temperature below 50 has them not performing well ... below 32 they are clubs that are not even functional. norminstormin: fingers lock up when i,m cold MikeG: upper 80s today. Bruce: I hate going to the bathroom after just coming inside on a cold day. The hands do not do what they are supposed to do. MikeG: 10-4 on that!!! MICH: Mike... you lucky dog at 80... if it gets super hot... does it affect you the same way as cold Bruce: Trying to write is difficult enough, but when the hands are cold I can hardly hold a pen let alone write anything legable. MikeG: one time I was sailing on the Frisco bay and had to use the john... barely got my fingers warm in enough time to unzip... Bruce: I know that feeling ... MikeG: no - hot is fine with me. The hotter, the better. Bruce: Panic in the streets or pants anyway MikeG: yep! Bruce: Ed, do you have another run scheduled soon? MikeG: same here - cursive is impossible now. Bruce: My neighbor has been preparing all this month for the New York Marathon. He is a running machine. TerryW entered the room. Ed_M: Bruce, the first race is tomorrow Bruce: Morning Terry TerryW: Hello all MikeG: hi Terry. TerryW: Sorry I am late Bruce: What distance? MikeG: did you send out a chat notice? MICH: Terry, is it cold in Cal today? Ed_M: It is the shortest one - just 10K - I am not sure if Sean will be running, as he is injured TerryW: I forgot, Dirst time in 6 years LOL Bruce: What happened to Sean? TerryW: first MikeG: //1 Ed_M: He has some ligament injury, pretty typical of bikers and runners TerryW: Ouch, hope he gets better Bruce: Yes, those 'hogs' can be tough on a guy. Ed_M: I have not heard from him in a couple weeks so I do not know how he is doing. fl-don entered the room. Bruce: Morning Don Ed_M: Essentially, it is an overuse injury MikeG: morning Don TerryW: Hi Don fl-don: hi all, trouble getting on again????? MikeG: you're lucky you wern't drinking wine last night... Bruce: My neighbor that runs marathons several times a year always seems to have some type of injury. TerryW: I had a strange error this morning also loggin in, Ut told me the first time that my account was not active Ed_M: Marathons are tough on the legs TerryW: I tried again and I got in MikeG: yep - running is really hard on the joints. fl-don: got in 2nd time TerryW: me 2 Bruce: It has been a long time since I had any sports injury. I actually miss those days. fl-don: looking 4ward 2 conference TerryW: I fot my 2 pups back last night from the Vet, I had the works done on them, Spayed, Neutered, dew claws removed and on small tumor removed, they are doing good Bruce: Yes, the conference is two weeks away. TerryW: got Bruce: Glad to hear it Terry. Have they calmed down any? TerryW: yes a bit Bruce: Good TerryW: they are now 50lbs Bruce: Don, are you going in early or staying late this year? fl-don: any news on the research front? MikeG: what kind of temps can we expect in Vegas? TerryW: We will be arriving sometime Mon afternoon fl-don: goint to vegas on nov 2 (fri) and staying a week Bruce: Nothing new from my side. Ed has reviewed a couple of research projects that are taking place by post-docs. fl-don: temp in poker room is 72 with no rain TerryW: It starts to get cool in Nov MikeG: 70s TerryW: windy possibly Ed_M: Not really, although there was an announcement that a British group was given the go ahead on a new treatment for Duchene's (sp) Muscular Dystrophy Bruce: Don, what kind of poker do you play? Hold-em? fl-don: hold em TerryW: <-----not a big gambler TerryW: Show me the buffet :) MikeG: craps for me! TerryW: Murray broke his foot again I hear Bruce: I enjoy watching the Hold-em tournaments on TV. The main event is one of my favorites. fl-don: staying out on the strip and taking the double decker buses to downtown MikeG: how'd he do that? TerryW: he fell and also hurt fom vertebrea Bruce: Ouch! How did that happen? MikeG: swimming too hard in his endless pool??? TerryW: slipped I think Bruce: Bummer! fl-don: i use a chair to prevent bone breaks MikeG: I've been real lucky here lately - no falls at all. MikeG: knock on wood! norminstormin: this past thursday too my knee buckled and i fell Bruce: Murray and I seem to hold the record for injuries the last few of years. FOruntately, I haven't had a spill in a long time now. TerryW: Within the last week I have fallen about 20 times, no breaks yet TerryW: on grass and dirt & gravel TerryW: no cement TerryW: been busy MICH: The U here in Utah has a doctor who just received a Noble Prize for being one of the 1st to do knock outs in DNA of mice to study disease... their lab is planning on researching MS to alzheimers... I trying to get my ALS/MND doctor to test my blood for number of neurons in the spinal cord... and maybe I show now try for other studies? TerryW: done now Bruce: I am a little concerned after my last break. I am very cautious and spend more time in the chair. I still exercise every day and believe that has really helped strengthen my quads. TerryW: All I have left is to split firewood but I am going to hire the neighbor kid to hand me the logs and I put them on the splitter and make the kindling Murf entered the room. Bruce: Mornig Murray Murf: morning all MikeG: Hi Murf TerryW: Hi murray Ed_M: Morning, Murray Bruce: I heard you had another fall. What happened? MikeG: how's the foot? Murf: I'd forget my head lately if it wasn't screwed on Murf: foot is ok the back hurts Bruce: Where did you fall? Murf: I fell in the bathroom again Murf: pulled a bruce but got lucky TerryW: Murray your wer'nt apping your fett in the stall were ya ? LOL TerryW: tapping Murf: I noe have the " I fell and I can't get up" button Bruce: Good to hear. I hate the bathroom ... bad memories. TerryW: kidding Murf: I hear that TerryW: one of those devices are food to have TerryW: good TerryW: my typing is terrible this morning Bruce: Ever since I bought the shower stool, my life has been a lot better. Murf: one for the wrist and one for the neck fl-don: are they meeting for dinner the day be4 conference this year? Bruce: Yup fl-don: where and when? Murf: Don - yes we havew tickets to the Tournament of Kings Bruce: Murray has arranged a fun evening. Murf: 8:30 TerryW: Don, did you get our e-mail announcment fl-don: probably, but dont bother to read stuff TerryW: Excalibur Knights dinner fl-don: mon? TerryW: yes Murf: we'll leave the hotel about 7:30 or so with the first load LOL TerryW: let murray know if you want to attend norminstormin has left the room. fl-don: k TerryW: he has the tickets Murf: I bought extra tickets so will have some extra Ed_M: Guys , I need to go - till next time. Ed_M has left the room. Murf: Is Norman ok Murf: where is everyone going? Bruce: He was fine this morning. He said he fell this week, but didn't hurt anything important. Murf: was it something i said? TerryW: I need to take a shower to be presentable for the board meeting Murf: good Murf: you need one terry LOL Bruce: We didn't hgave much of a turn-out today. TerryW: I forgot to send the reminder out TerryW: :( Murf: Just be for the conference attendance goes down TerryW: was so busy here Murf: I heard that Terry TerryW: I am taking a Mulligan on that MikeG: the t-shirt thing took up a lot of your time too. Murf: I finally got the dehumidifiers out of the house MikeG: thanks for helping. Murf: Flooded on Monday night TerryW: you are welcome Bruce: Mike, the t'shirt idea seems to be coming together. Thanks for running with it. fl-don: i cant find any e-mail re dinner on monday? TerryW: you guys did most of the work, thanks fl-don: could anyone resend? MikeG: it was my sister that did it all. Murf: only three rooms but cut the house in have for a week TerryW: Don I will send you the announcment Murf: I'll vote Ya on the T shirts GOOD JOB Mike fl-don: ty terry Bruce: I believe one of the topics we should have on a future chat should be something about dealing with winter. Murf: Don don't buy tickets online ... we got them cheaper fl-don: k MikeG: yes - move south! Bruce: I thought I had MICH: Do the taxi-vans for wheelchairs in Vegas also usually have lifts that could even lift a 350 pound power chair? Murf: Ya move south!! like the birds fl-don: is this one of the eat with your hands places? fl-don: taxi's in vegas have ramps Murf: Mick all cab co in Vegas have accessable taxis fl-don: minivans Murf: Don - yes!! Murf: and cheer for your knight! fl-don: had rrouble eating with hands here in or lando fl-don: more food on floor then in belly Bruce: You can ask for a fork or spoon fl-don: k Murf: yes ask for a fork Bruce: Or a straw fl-don: gotcha Murf: or a shovel Murf: My daughter says she is comming to look after me. I can't wait TerryW: Just sent it to you Don fl-don: ty TerryW: yw fl-don: ill buy u a beer in vegas terry Bruce: It looks like we will have a good turnout again this year at the conference. Nice job Murray. And, thanks to the rest of the planning team for their help. TerryW: ty Murf: thanks to the committee MikeG: yes - thank you! You guys did great! TerryW: I am going to go shower & eat before the meeting. See youall later MikeG: cya TerryW has left the room. fl-don: take care t Bruce: It is a lot of work and requires constant attention. Murf: me too see you guys in Vegas Bruce: Take care fl-don: bye m Murf has left the room. Bruce: We are getting down there pretty quick. It just shows we do need a good topic to keep everyone's attention. fl-don: we will b together in 2 weeks Bruce: Eric, you have been extra quiet today. What is happening up in Utah? MICH: Being Bruce and Mike and Don live in the South... do you guys ever get together inf Fla or Ga? MikeG: Bruce, have you heard anything about stem cell treatment in Costa Rica? fl-don: mike & i get together often. only live 1 mile apart Bruce: We have asked for one year updates from the two doctors we gave grants to this last year. The initial reports sound pretty promising. Bruce: No, Mike. MikeG: Don & I were together at a MDA fundraiser last night. MikeG: we live in he same community. fl-don: mike & i drink beer together. good medicine Bruce: Mike and I chat via emails and occasionally on the phone, but we are ten hours apart. MikeG: used to be 3 of us but John Mengel passed away in 2004. fl-don: miss john MikeG: me2 Bruce: John is someone that keeps coming up. I miss that guy. MikeG: everyone does! Bruce: He had a great attitude. fl-don: john did alot for the community re: computers MikeG: yep! MikeG: very positive! fl-don: good friend 2 Bruce: Eric, do you know of anyone in your area with KD? fl-don: gotta go guys, cya in 2 weeks fl-don: bye Bruce: Take care don MICH: I'm the sole KD person in Utah it seems... but see a person in Arizona when I go down there and a KDer from Conneticut stopped by on his way to Yellowstone this last summer (Bill & Jameson) fl-don has left the room. MikeG: cya Don Bruce: That was nice Bruce: We have developed a good community of friends throughout the northern hemisphere and some from around the world. MICH: We'll you guys have a good week... and if youre ever in Salt Lake or Phoenix let me know Bruce: Take care END CHAT |
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