Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Kennedy's Disease can be a lonely existence in many ways, but the KDA makes me feel I'm not alone, thank you."

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Kennedy's Disease Chat Transcript  12-06-2008

Topic:  Open Forum

Host: Bruce Gaughran


billeric: Good morning guys
Bruce: Morning
fl-don: MORNING
Bruce: Morning Don
fl-don: Were u 2 @ conference?
Bruce: No, I couldn't go this year. Family health issues required us to stay close to home. I heard it was a very good one.
Bruce: How are the legs doing?
Bruce: Morning Billeric
Bruce: How are you today?
billeric: Good morning guys. This new chat room is putting me thru my paces!
Bruce: Hello Terry
Bruce: Morning Stan
TerryW: Hi Everyone
stan: Good morning everyone
billeric: Sorry I missed the last conferance. Bet it was a good one.
TerryW: bruce, you feeling bettter?
fl-don: leg is ok now. had a kink in it and was going to conference alone. did no want to chance it so cancelled trip
Bruce: Doing better, thanks
TerryW: Sorry Don
fl-don: life goes on
fl-don: did they tape the research portion of the conference???
TerryW: I can just stay in chat for a little bit. Susanne is going out of town for all next week and we need to get lots done this weekend
Bruce: I am on the phone with Family, will be right back
TerryW: Don, notaping was done :(
fl-don: :(
fl-don: where is next years conference to be held?
TerryW: We nned to find some pro volunteers to tape it for us and put it on DVD
TerryW: need
TerryW: college kids
fl-don: i have lots of problems working with cd's and dvd's. getting old i guess
TerryW: Let me check
TerryW: Don we dont have 8 Tracks for you :D
fl-don: lol
TerryW: Hi, those that just joined
billeric: Hi Terry
loshimo11: Good morning everyone. This is Luis Shimomura joining in from San Francisco.
TerryW: Dang joe, I keep forgetting to change your avaratar , you are still green
Gary_KC: Good morning. This is Gary joined from Kansas City.
JoeK: Hi from Greensboro,NC
Michael17860: Hi All
TerryW: Today I am trying to type on the laptop, I hate these keyboards
TerryW: Hi Michael, Lou, Gary
TerryW: Hi Mike
Michael17860: How did the conference go?
TerryW: I have a question for you all, hold up your hand and tell me if your ring finder iis longer than youor index finger
MikeG: Hi Terry
billeric: Nope
stan: Not mine
MikeG: mine is
JoeK: no
TerryW: I was watching a show that said that all men have a longer ring finger than index finger, genetic trait
MikeG: but not by much...
fl-don: not here
loshimo11: Mine is slightly longer
TerryW: women are opposite
JoeK: correction yes
MikeG: a silly millimeter longer...
TerryW: my index is way longer
Michael17860: Yes, just three hairs longer
fl-don: tw, were u watching the scifi channel????
TerryW: I guess I have the famale traits
TerryW: LOL
TerryW: I was watching a show called MANSWERS
TerryW: hi ron
Ron: Good morning all.
MikeG: morning Ron
loshimo11: Good morning Ron
TerryW: so what wasthe big news at this years conference? I was not able to go
MikeG: the dutasteride trial is over and they locked the data. Results will be in about 3 months.
Ron: We sure missed you and Susanne. There was alot of excitement about current research. Great news.
TerryW: can't wait to hear
MikeG: the people who participated will know if they were on a placebo or not in about a month.
TerryW: Sohow is everybody firing this recession?
TerryW: fairing
MikeG: ASC-J9 looks VERY promising but the trial will be VERY expensive to set up.
Ron: Bruce--how is Cindy's parents getting along?
loshimo11: Why is that?
billeric: Just hanging in there.
MikeG: $1.5M - $2M
fl-don: asc-j9?????????????????????
TerryW: Mike we need a celeb sponsor
MikeG: :)
TerryW: Maybe we shoud go in front of congress and apply for a ASC-J9 bailout
MikeG: yep - I've already tried Opra and several others... no luck in even getting a response!
TerryW: Since they are giving money away
Ron: LOL
Bruce: Sorry, my sister called from California and I needed to talk with her. I am back.
stan: My research says we won't get a celeb sponsor until one gets the disease, or a close family member has it.
TerryW: I will even drive cross country in my own car
fl-don: family comes first
MikeG: true
Michael17860: I will drive my wheelchair
TerryW: :)
fl-don: mike, say a prayer over john's grave for judy & me
MikeG: k
TerryW: 2 million is noting compared to the other bailouts
TerryW: nothiing
MikeG: very true!
Bruce: Terry, my ring fingers are longer than the index finger.
MikeG: and if you look at some of the ridiculous trials out there that cost $5M and up you really get sick...
TerryW: true Mike
Bruce: Clinical trials are very expensive. They need some government support (like NIH) or a chemical company like Phizer to support the trial.
TerryW: Sorry to hear about John
TerryW: :(
MikeG: well, from what Dr. Chang showed us, J9 will totally cure KD mice - with NO SEXUAL side effects!
Bruce: Most chemical/drug manufacturers want to trial drugs that they can sell a lot of product and make tons of money off of. KD doesn't provide that for them.
MikeG: that's EXACTLY right Bruce!
MikeG: that's why J9 has to be funded by investors or celebs.
Bruce: I had a physical therapist come out the last two weeks and evaluate my exercise program. The PT offered up some tweaks to the program and additions that are really interesting and seem to be helping.
MikeG: if they could find other cures for the oral J9 we might have a chance of going to trial
TerryW: would ASC-J9 also benefit those with huntingtons?
MikeG: the topical has already been proven to treat acne and baldness.
Bruce: As I progress and work out the kinks, I will update the Smart Exercise Guide. What I have found over the last couple of years is that I am over-compensating for some of the weakness and by working specific muscles I am stronger and more stable.
loshimo11: MikeG...Did Dr. Chang really state that J9 WILL cure KD? That's a very strong statement.
Ron: Like what did your PT recommend in addition to what you are doing Bruce
MikeG: just need something like SMA to really fire the drug companies (and celebs) up!
MikeG: it does in KD mice.
TerryW: that is a major step
TerryW: now we just need to convert that to humans
stan: I've been called a Rat, does that count?
TerryW: LOL
Bruce: Ron, it is too much to add here, but one primary focus is the use of sight (visualization) as well as performing the exercise to tighten (contract) and hold more muscles than just the one you are using for the exercise.
Michael17860: Mike did they say if J9 had any side effects on the mice?????
loshimo11: Well, I've worked for some Mickey Mouse operations before. Maybe I qualify.
MikeG: the mice had NO side effects
Bruce: Ron, also was told to reduce the reps and focus on contracting and holding for a count of five each time I perform an exercise. It really works.
TerryW: Bruce I try to keep my body moing no matter how much it hurts even if I have to crawl so my muscles get used
MikeG: I don't think the mice were Dr Merry's KD mice... I think they were from Japan. Correct me if I'm wrong on that, Ron.
TerryW: moving
Ron: Right Mike.
TerryW: I don't know if I m doing any good
Bruce: I was most impressed that the PT had experience with KD. She worked on a person in Daytona Beach that had KD. She also wanted to visit out web site to learn more about the disease. That was positive.
stan: I find I'm losing strength and muscle regardless of what exercises I do.
Michael17860: If I win the Power Ball tonight I will donate the 2mill for the trial......
MikeG: it was very impressive to see what a difference J9 made... the KD mice were dragging their butts around the cage not even able to get IN the wheel, where the J9 mice were all over the cage crawling up the walls and hanging upside down from the top, and running in the wheel.
Gary_KC: I uderstood the crinical trail would be VERY expensive. So can they apply for 2-3 SBMA paintents first to save the cost?
TerryW: I have got to go all, Chat with you next time
billeric: This is exciting stuff
JoeK: sign me up for some J9
loshimo11: Wait... Let me check if I won the Mega Millions last night. If I won, I wil also donate the necessary 2mills for the trial.
Ron: So long Terry. Stay healthy.
MikeG: do a GoodSearch on ASC-J9 - you'll see some interesting stuff on the top hit...
Bruce: One of the additions to my exercise program is to stand near a wall (with a grab bar) and close the eyes. Once stable, let go and stand with your chest out, stomach tight, and butt pulled in (like at attention). You need someone standing right behind you to catch you in case you sway too much. Once comfortable with just holding yourself upright, you then begin to sway side to side (slowly). Boy does this work muscles!
MikeG: sounds good Bruce.
Bruce: I feel positive about it and I can see the difference in getting up from chairs, walking, etc.
Michael17860: Loshimo11 Well we are waiting????
Bruce: Morning Poohsdaddy
fl-don: any other news other than j9?
loshimo11: Dang!!! Only got 2 out 5 and no mega number. I think trying to get a celeb will be easier.
stan: So what happened with the Dr. Fischbeck chat that was supposed to be rescheduled?
Bruce: The KDA awarded Heather Montie with a research grant of $50,000. She works in Diane Merry's lab.
Michael17860: I think your right about that......
Bruce: Kurt Fischbeck is still having problems getting into our chat room because of new security proticals that the NIH has installed on their computers.
loshimo11: Well, I'll be playing the SuperLotto here in California tonight. Wish me luck.
poohsdaddy: Good Morning to all--had to wait for our son to finish what he was doing first.
MikeG: there are several things that the doctors and researchers are looking at like heat shock proteins and 3 other items
Michael17860: what are heat shock proteins?????
MikeG: I don't remember exactly how they are used in the cell but it's something to do with the aggregate in the neculeus of the cell. Do you remember Ron?
stan: Sounds like a steak fresh off the grill, forced down your throat.
MikeG: I think that's a question for Ed.
loshimo11: Sounds painfull, whatever it is.
Bruce: :)
poohsdaddy: I had a no9te from Angela this week that indicated they are considering a number of new compounds at NIH for further study;and the results for dutasteride study are going to be completed by early Spring 2009.
Ron: It was really great to see all the folks from Canada at the conference. They really showed alot of interest.
Bruce: I know that Dr. Taylor was impressed with the J9 results.
MikeG: here is the protein used 17-AAG and 17-DMAG
poohsdaddy: Is there more info about the J9 on the Kennedy's site? or sometime soon?
Bruce: There is information on the web site that Dr. Chang provided (two reports).
MikeG: and androgen receptor modification IGF-1
poohsdaddy: Thanks I'll try looking it up this week.
Bruce: IGF-1 is the super mouse program, right?
MikeG: I believe so Bruce
loshimo11: We ned Ed here. All this stuff is flying over my head.
MikeG: used in conjunction with exercise
Bruce: What I liked about that is that it could be used by a child to reduce/minimize the impact of KD later in life.
Bruce: Ed knows how to explain things in a way that I even understand them.
loshimo11: Was Ed at the conference?
Bruce: Yes
poohsdaddy: Don't feel bad; we're all learning more as we go along together. I'm still confused by some of the terminology.
Bruce: We are always asking our Scientific Review Board to dumb down the explanation so we can understand it and explain it to others. Ed seems to be able to do that quite easily.
loshimo11: Maybe we can invite Ed to join us in one of the upcoming chats.
MikeG: one more thing that was mentioned as a theraputic target was mitochondrial dysfunction: CoQ10 idebenone
billeric: Any discussion on the location of next years conferance?
poohsdaddy: Does anyone else feel worse lately due to the colder weather? I've been in more pain since the snow and colder air.
Bruce: It will probably be in the Chicago area.
stan: I don't have pain. I just feel cold all the time.
Bruce: Cold is tough on the muscles.
MikeG: I felt bad when I had to go outside the Hotel in Baltimore - it was 24 up there!
MikeG: now I'm back in God's country where it's 75
Ron: I've been weaker since no longer being on the trial drug at NIH.
Bruce: Circulation issues are a major factor.
poohsdaddy: Chicago would be more accessable for me; only a little over two hours away by driving.
billeric: Az. feels good too Mike
loshimo11: How is the conference location determined? Is weather/temperature a factor?
Bruce: We have been 10-15 degrees below normal this last month and it is no fun when I take my dog out for walks (I ride and he walks).
stan: Truck wouldn't start the other day, 24 degrees. I was out there cleaning battery cables and charging the battery. Got chilled pretty bad.
MikeG: Gotta run - Paula and & are taking Pauline Mengel to see John's gravesite in Bushnell, FL about an hour North of here. Have a great one and I'll chat with everyone later.
poohsdaddy: Ron, I agree with you as to the noticeable changes since NIH.
billeric: By Mike
loshimo11: Bye MikeG. Take care.
Ron: So long Mike--say hello to Paula for me.
stan: Bye Mike
poohsdaddy: Mike, say hello to Pauline for me. John was my first cousin. Thanks!!!!!
Bruce: I will ask Ed to host a chat room in the near future to explain more about what was discussed at the conference.
Ron: Good thouight Bruce.
billeric: That would be great Bruce.
loshimo11: Bruce... That'd be neat!! I'll be looking forward to that.
poohsdaddy: I would like to talk or write to her, but do not have an address or telephone number.
Bruce: Poohsdaddy, write Mike an email and ask for the info.
Bruce: The ranks are thinning quickly. Is it something I said?
Bruce: The KDA has 902 active associates as of yesterday. We have grown substantially the last couple of years.
billeric: I haven't been on a chat since last spring. I miss them.
Bruce: 70% of the associates have the defective gene.
stan: I don't think so. More like every one has things to do and it's almost lunch time here.
Michael17860: Bruce do you know who all is working with ACS-J9???????
poohsdaddy: I don't have his e-mail address, you could forward mine to him and others with the chat.
Bruce: Dr. Chang at Rochester University has the patent. He has set up a corporation and is looking for backers I believe.
Bruce: Poohsdaddy, you can find it on the KDA web site under board of directors.
poohsdaddy: OK I'll try that later. Thanks.
Ron: Has anyone noticed wrist pain from using a cane or trying to raise from a chair?
Bruce: No Ron
billeric: Nope
poohsdaddy: Do we have a tentative guest for December 20th or anothe open forum?
Bruce: You might have pulled something or stretched something the wrong way.
stan: Not me, but my brother is experiencing wrist pain and cramping.
Bruce: I don't know right now. You can check the KDA calendar and it normally will tell you that.
Ron: I've been having alot of pain in my right wrist. I am atributing it to use of the cane.
loshimo11: Well... Gots to go in a few minutes. Happy Holidays to everyone (just in case you can't join the next chat). Stay healthy and vertical!!!
Ron: Oh well--what is one more challenge. Right?
Bruce: I just looked at the KDA calendar and it shows Murray as the host with no topic or guest shown.
Bruce: Thanks and the same to you
Michael17860: Ron do a web search on SAJS and look at the symptoms and see if that is what you have......:)
Ron: OM thanks.
Ron: OK
Bruce: I do knnow that Dr. Fischbeck is interested in joining us once he get's through the firewall proticals at NIH.
Michael17860: Well all see you later, got to go to Lowes ..........
Bruce: Take care
Ron: Well--I must go for now. Stay healthy till next we chat.
poohsdaddy: Thanks; I'll try to be here again. We'll be giving out boxes of food to the needy that morning also for SVDP Society. Bye and Best to all.
Bruce: Well, this has been an interesting chat on a variety of subjects. Thanks to everyone for participating. Please stay upright and healthy.
billeric: Thank you Bruce
stan: See you all. Have a Safe and Happy Holiday Season!
Gary_KC: Take care and see you the next chat. Bye.