Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  12-20-2008

Topic: Ed Meyertholen - Current Research and KDA Conference review

Host: Murray Williams


murf: Hey Bill
billeric: Good morning Murray
murf: Hows the weather
billeric: Cool in Huston this morning?
murf: Katy is 70
murf: Where are you?
billeric: We are cool 39 this morning
billeric: Arizona now
murf: The weather is bad in the north
Terryw: Hello
murf: hey Terry
billeric: Hi Terry
murf: whos your weather Terry
murf: hows
Terryw: Its cold for California
murf: lots of snow?
Terryw: this morning at my house 26
murf: aahhhhhh
Terryw: we got snow this week
Terryw: more storms coming
murf: I guess I can live in Texas or Florida
billeric: Ain't it fun Terry?
Terryw: nope
murf: In 10 yrs I'll have to move to Mexico
Terryw: Houses in California are not built for freezes and winter snow, pipes freeze etc.
murf: Terry, you need to hire a handy man full time
billeric: If we make 10 yrs Murf
Terryw: I had to un around and make sure water was flowing to hore corrals
murf: I know I'm looking at 5 but trying not to think about it
Terryw: Well shed
murf: run arround :o
Terryw: Murf trying to find a good handyman here is like trying to find a saint in a prison
murf: LOL thats not going to happen
Terryw: yep
murf: I had another fall
murf: on my right eye
Terryw: :(
Terryw: dang, sorry murf
billeric: We sold our Minnesota place as we couldn't keep up the maintaince
murf: mostly held but it looked very ugly for a while
Terryw: Hi Virginian
Terryw: First time here?
murf: Morning people
Terryw: Hi
loshimo11: Good morning everyone. This is Luis Shimomura logging in from a rather chilli San Francisco.
murf: Hey Mike
Terryw: Luis is the gadget man :D
billeric: morning loshimoll
MikeG: hi Murf
Terryw: I bet his house is full of neat gadgets
Terryw: hi mike
MikeG: hey Terry
billeric: Morning Mike
MikeG: hi billeric
Michael17860: Hi all
loshimo11: Got quite a few gadgets, but not always enough.
murf: hey michael
MikeG: hi Michael17860
Terryw: Hi Virginian, is this your first chat?
Terryw: hmmmm
Ed M: Hello everyone
murf: hey Ed
loshimo11: Good morning Ed
billeric: Hi Ed
Gary_KC: Good morning. This is Gary Uchiyama from Kansas City. It is VERY cold this week in Mid west.
Terryw: Virginian, if you are having any issues in the room e-mail me at This email address is being protected from spambots. You need JavaScript enabled to view it. and we can try to help
murf: that looks better
murf: Gary, Houston is 70 deg
Terryw: Ed are you all set to go?
MikeG: I took a bad fall earlier this week - luckily didn't break anything, just gashed my forehead open...
Terryw: You and Murf ?
billeric: Only in the 60's this week in Az.
MikeG: got to know when to sit down!
Ed M: Well murf, be honest - tomorrow will have a high of only about 45 in Austin
Gary_KC: It was 7 deg Monday.
Terryw: Mike Murry fell also
MikeG: good running weather...
Terryw: cold gary Brrrrrrrrrr
murf: 'm looking at 71 in the back yard and 68 at the school
Ed M: that is true Mike - this morning was warm and humid - had a bad run
murf: tomorrow ... thats way to far in the future for me LOL
loshimo11: MikeG... I feel your pain. Had a similar incident last year. It wasn't too much fun!!!
Terryw: Ed when is your next run
Terryw: distance challenge
Ed M: Jan 11
Terryw: k
Ed M: that is the next race
MikeG: you've been turning better times than last year before
Ed M: so far - I am feeling quite good, generally
MikeG: great
Ed M: It is odd, the more I rest, the worse I feel
Terryw: So Ed, good news at the conference I hear on the research.
Terryw: sounds promising
Ed M: There are the usual suspects
murf: Ed ... what was the biggest thing you got out of the conference?
Ed M: - generally they are looking for drugs to affect the degradation of the mutant protein to prevent accumulation - which apparently leads to the death of the cells
Terryw: I have posted a link to MikeG's summary on the KDA website, The link is on the kmain KDA page and the whats new page.
Virginian: [i]terry just found the typing line
Terryw: THat is ok Virginian, Everyone hets a mulligan
Terryw: gets
Terryw: LOL
murf: and more than one lab are making significant advances
Virginian: hey all think it's cold.............only 27 here in il
murf: Virginian politically too
murf: LOL
Terryw: Virginian, have you been in chat before?
Virginian: everyone get the chills
Ed M: There was a new paper put out by Sobue (from Japan) that reported that a drug dealing with this was effective in mice models.
Virginian: naw.......just got the java
MikeG: what is the drug, Ed?
Ed M: Murf, we are lucky to have several researchers who work primarily on KD,
Virginian: was at the conferencethough
Terryw: oh, ok
murf: word
Terryw: RD, so what is the next step for the researchers with the AS CJ9, to try it in humans
Terryw: Ed
Virginian: just had a sonogram all is ok
murf: Paul and Andy and Diane and Lenore all making great advances
Ed M: Mike, it is one of those acronym compounds - 17-DMAG
Virginian: still a lot of pain in breast
MikeG: oh, yeah. I remember that on a slide from Merry or Fischbeck.
murf: Virginian me too the right one
MikeG: heat shock I believe
Ed M: The drug increases the degradation of the mutant protein and relieves the symptoms in the mice
MikeG: increases?
Ed M: and the mice did not complain of any major side effects!
murf: not one bit?
murf: brave mice
Virginian: murf is that your primary use side?
murf: yes
Ed M: Yes, it allows the proteasome (sorry about this term) to degrade the AR so that it does not accumulate any toxic compounds.
murf: is there a relation here?
billeric: Is breast pain associated with KD?
MikeG: ok
Virginian: mine is on primary
Virginian: YES!!
Bruce: Ed, do the researchers feel they have enough info on this to move it forward to a trial?
murf: I don't think so ... we just grow themkj and I think that is were it comes from
UTE: I fianlly made it in after being knocked off trying to log in for an hour??
Ed M: This is from Japan - and I do not think that the drug is FDA approved - that would mean a lot more testing to ensure its efficacy and safety.
billeric: Good morning eric
murf: Angela was not worried about my breats but always checked them for lumps
Terryw: Sorry UTE, Send us an e-mail letting me know what happened
Bruce: I applaud your efforts, Ute
UTE: Good Morning Bill and all
Virginian: Good morning UtE
murf: morning Bruce
Terryw: UTE are you on a dial up connection or DSL or cable
Bruce: Morning Murray
UTE: I'm on a dial-up with an old 1999 computer
Terryw: I am bidding on a Senate seat on Ebay currently
Terryw: :D
MikeG: :)
murf: that explains a lot .... surprised you got on
billeric: Any word on what the next trial will consist of?
Virginian: Go Terry
Ed M: billeric - not at this time -
murf: Terry for Priz
Terryw: If I win the seat I can really get some KDA attention
Virginian: Got to be better than what we have now............I 'll vote for ya
murf: will you move?
Bruce: Ed, was there any more discussion about an exercise study at NIH?
murf: yes Bruce ... now they are saying we definately need it
Ed M: there was talk but the talk dealt with how to design it. IT is not an easy thing to study - lots of scientific pitfalls.
Ed M: There were no final decisions on how to do it.
Bruce: I can understand that but there is a need for it in my opinion.
murf: and the sudy in the physical part of the study is not complete
Ed M: There was talk of trying to do it in mice - but how to make them exercise (and keep others from exercising) is a problem
murf: but they told us to excersis ... but don't over do it
murf: The mice have a problem with push-ups
Bruce: Did Dr. Paul Taylor have a chance to pitch his database idea to the rest of the researchers? If so, where did it end up?
Ed M: In humans, there are many factors that would make it very difficult to get a valid answer - doing it poorly is probably worse than not doing it at all.
Virginian: how do you know when too much is too much
Virginian: My dr recommended swimming
Bruce: Virginian, listen to your body and it will tell you when too much is too much.
murf: when you feel tired stop
Ed M: Bruce, he talked to Kurt about maybe chaning the emphasis of the kda grants to studies for preparing clinical trial - remember, Paul did not stay till the end of the conference.
murf: No pain no gain does not apply here
UTE: But then your body has a hard time telling you when to little is too little
Bruce: I am working with a Physical Therapist in the home right now and I am amazed at the improvement in strength and balance.
loshimo11: Ed, out of all the research presented at the conference, which one do you think was the most promising?
murf: J9
Ed M: I find the more I do, the better I feel - taking a day or two off seems to make my next run much harder.
murf: I hear you Ed all I want to do lately is sleep
Ed M: loshimo11 - I would say the J9 (the drug made from an ingrediant of curry) has good potential
Bruce: Ed, I am the same way. If I exercise every day it is better then skipping days. I have more pain if I skip days also.
Ed M: Bruce, I don't get pain, just a very tired feeling in my legs as I run (today, for example).
Michael17860: Ed do you take any kind of supplements or anything that make you be able to do what you do???
Ed M: I also seem to do better in the cold - today was warm and humid here
Terryw: Ed gets weak near Kryptonite LOL
Ed M: Michael17860 - no - unless you count diet coke!!
Virginian: i've a bro in Ga that is takin creatine and he is better than i right now
MikeG: Michael17860, are you still taking creatine?
murf: Virginian I tried that ... didn't work for me
Ed M: I try to eat okay but I have to admit that I am not that concerned with my diet. I worry more about my weight.
billeric: I tried it too-nothing
murf: aren't they related
Ed M: ... and running helps with that and allows me to eat.
Michael17860: Yes everyday, But I can not exercise everyday, I get burnt out...
murf: I'm on a see food diet
Virginian: what you see you eat?
MikeG: I'm taking arginine and also can ot exercise everyday
murf: I'm waiting for someone to invent a shower that take off wieght
murf: Virginian yup
loshimo11: Thanks Ed and murf. Now, as a group or individual, other than continue donating to the KDA, are there any other suggestions on how to try to speed up the next step in the J9 process?
Ed M: DId any of you look up the link that Terry sent out about the Chinese actor with KD?
Bruce: Yes, that was interesting.
murf: yes we need him to contact us and I'm sure he will
MikeG: yes
Ed M: loshimo11 - donating is it. We need the research to find the right cure.
Bruce: For those interested, here is the link:
Ed M: I was wondering if there was a way to contact his agent in some manner.
murf: should we?
murf: or shopuld we wait?
Ed M: I thought it was interesting that the original diagnosis was much more severe - they did not say it, but I assume ALS>
murf: friggen fingers this morning
murf: as always
UTE: I must burn quite a few calories trying to get in and out of the bathtub...using my elbows, bent knee...
Terryw: I think we should let him know about the KDA and let him take the next step
Bruce: Yes, but I also liked how they added o cure' and normal life span.
murf: as always Ed probably
Terryw: Hi Dick, I see it worked for ya now
Terryw: :)
dsproul: yes, thanks--I thought I was all set
Bruce: The KDA could use a headliner.
Terryw: yep
murf: yup
murf: Texas nyep
murf: yep
Virginian: Vir yewp
murf: i hear ya
dsproul: ??
murf: LOL
Virginian: maybe we could send him an invite
murf: Humor is very important
Ed M: THis is a link from yahoo -
murf: Virginian that is debatible
murf: me will come in when he is ready
murf: He will come
Bruce: Ed, was there anything sugnificant besides J9 and the earlier Japan study on the research front?
Ed M: That is the only new info (and they are not that new)
Bruce: Also, do you believe the economy (translated to less money available) is hurting research currently?
murf: Virginian we are the most comprehensive data base of KD in the country and lots of related searches will come up KDA on the first line
billeric: Did anybody seem to get any results from the last trial?
Ed M: Despite Paul's talk at the meeting, I still think that the main problem is with the inability to destroy the mutant protein. It appears that most of the possible drugs seem to act on that aspect.
murf: billeric will not be availablr for about 6 months
Ed M: I thought that they were hoping to get some info by spring, but I could be mistaken.
dsproul: does it acually work on anybody?
Ed M: what is 'it'?
Ed M: dutasteride?
murf: Ed M yes but the EMG results will take time
Bruce: Wasn't there something about notifying all those involved in the trial whether they had the real drug or a sugar pill?
Ed M: I though by spring.
Virginian: Yes
Ed M: They were going to lock the data and that will allow for info to go out.
MikeG: I heard that those in the trial would be notified if they were on the real thing within 2 mos.
murf: ok By April or May LOL
murf: summer starts June 22
MikeG: and the results should be known in 3 or 4 mos.
MikeG: that would put it about March
murf: I guess what I'm saying is we'll get it first LOL
Ed M: not in Texas, murf, summer starts in April
dsproul: At 82 I would like to have a couple of good years. After that I don't care
murf: When is the first day of summer?
Bruce: WOW! 82, that is fantastic.
Ed M: murf - the first 90 degree day!!
murf: In the United States and the rest of the northern hemisphere, the first day of the summer season is the day of the year when the Sun is farthest north (on June 20th or 21st). This day is known as the Summer Solstice.
Virginian: i pray to make 82 right now
billeric: I am 74 dsproul-know what you mean
murf: I just got that from the internet but I see what you mean now.
dsproul: Bruce-My doctor says I'm doing well-balogney!
MikeG: wow! what kind of CAG repeat counts do you guys have??? must be in the low 40s
billeric: 44 for me
murf: 48
Bruce: Well is relative to the quality of life in my opinion.
murf: TJ is 62
Virginian: naw mine are somewhere round 95
murf: CAG rep not age
MikeG: dsproul, do you know yours?
dsproul: I dont know my doctor offers no treatment,
Virginian: yes.......dr was surprised so high
dsproul: Just tut, tut
murf: hey Joe
Bruce: Virginian, are you talking abouty CAG Repeats or something else when you say 95?
Virginian: CAG
Terryw: Here is a link to the follow up story on the Chinese actor with KD. He starred in a USA Sitcom also.
Ed M: Virginian - my guess is that there was a mistake - the highest recorded so far was in the 60's, I thought. You should be the subject of a medical paper with 95!!!!
dsproul: My brother is 84 and weaker that me which is expected I supose
joek: Joe kerlet - I was 77 at last birthday -older brother died at 77
murf: Virginian are you serious? 95 will be the highest CAG repeate recorded if its true!!!!!!
MikeG: billeric, are you still walking around at 74 and 44 repeats?
joek: I miss speld my own name Joe Kerley
billeric: Walking and falling!
MikeG: :)
Bruce: :}
MikeG: that's great!
Virginian: will look up charts ......but seems the dr was certain
murf: I think Kurt mentioned 60 something highest in the study too
Terryw: Hey They name us in the article
dsproul: I can walk but with great effort
Terryw: In the about what is KD box
Terryw: WOW
Bruce: Yes, and 60's was most unusual.
billeric: I use a walker most of the time now. Fell too many times with a cane.
murf: I ride now and still manage to fall
Ed M: Here is a link to a forum where fans are discussing the actor -
Virginian: i use a cane and walker when out and about
murf: no more walking for me unless its in the pool
dsproul: walker is too tiring for me I use a scooter for enything further that 40 feet.
Bruce: I need to run guys and get my dog out before it starts raining again. Ed, thanks for taking the time to join us today. We appreciate it.
murf: 20ft for me and I'm pushing it
loshimo11: Take care Bruce
murf: cya Bruce
Ed M: see you, Bruce
Virginian: raining??? im watching for snow
Terryw: I have to go also and get ready for our board meeting
Terryw: chat with you all again
Ed M: so long
murf: cya Terry
Virginian: Great talking to all:} :}
loshimo11: Happy holidays Terry
Virginian: BYE BYE!!!
billeric: Ed, sorry I missed the conferance. Sure enjoyed your Vegas talk last year.
murf: Next chat is Jan 3rd 2009
murf: Virginian cya
dsproul: Terry, would the board put out a posotion statment to advise doctors where to get latest info?
MikeG: murf, the meeting is at 12 eastern today, right?
murf: I think so
murf: LOL
MikeG: ok, I guess I'd better run too... see ya'll next time.
billeric: By Mike
murf: Is there anyone that has a question?
loshimo11: OK everyone... Time for me to go. Happy Holidays to everyone. Don't overdo it during the New Year's celebration. Stay healthy and vertical!!!
UTE: Happy Holidays to all, see you next year
murf: I'll need to go as well but you guys can stay on as long as you want
billeric: By Eric
dsproul: Bailing out, see you later
billeric: Happy H0lidays guys. Stay well
murf: Merry Chritmas everyone stay safe
Dart!: Y'All take care!! Thanks for the meeting.
Gary_KC: Happy holiday, all. Talk to yours next time.
Michael17860: Merry Christmas to all
frajabaru: hola
frajabaru: soy español
frajabaru: tengo la enfermedad de kennedy
frajabaru: deseo que me envien la informacion sobre la conferencia KDA en Baltimore a mi email:
frajabaru: This email address is being protected from spambots. You need JavaScript enabled to view it.
frajabaru: muchas gracias
frajabaru: feliz navidad
frajabaru: hola
frajabaru: a que hora comienza el chat?