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.
| 2005 - November 05, Fund Raising |
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Kennedy's Disease Chat Transcript 11-05-2005 Topic: Fundraising Host: Murray Williams Chat Participants: MurfLouLou Bruce kelly doughboy JoeK Terryw wolfman BEGIN CHAT
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: www.raisingmoremoney.com 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 Polaris.com 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. END CHAT |
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