Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript   12-03-11

Topic:  Research Update from KDA Conference

Host:  Ed Meyertholen


Stan
Good morning, carofer. Looks like we are early.
Stan
Good morning, Luis.
carofer
Good morning, Stan.
loshimo11
Good morning everyone, This is loshimo11 joining the group from a nice, sunny San Francisco.
loshimo11
Who's hosting the chat today?
Stan
The note said Ed M.
EdM
good morning
Stan
Morning Ed
loshimo11
Good morning Ed.
EdM
How are y'all doing?
Stan
Alive, but cold and tired.
loshimo11
Just got up and I'm enjoying a nice hot cup of coffee.
Gary_KC
Good morning! This is Gary joining in from Kansas City. It is rainy day with 46 degrees this morning.
Stan
Hi Gary
EdM
Hi Gary
loshimo11
Hi Gary.
Gary_KC
Hi Stan and Ed.
Gary_KC
Hi Loshimo.
carofer
Okay here. Just got our power back after the wind storm took it out.
EdM
I am in DC - sunny althougha bit cool
Stan
It's about 37 here. Still digging out from the 8" of snow earlier this week. Supposed to get rain today.
loshimo11
Mid 70's here in the Bay Area. The forecast for tonight is that it'll be dark.
Stan
It'll be dark here tonight too. What are the odds of that? : )
loshimo11
Haven't been in one of these chats in a while. Where's everyone else?
EdM
I was wondering why it was so emtpy
EdM
I may take this personally!!
Stan
Still on daylight savings time?
carofer
it sounded like a great topic.
EdM
Just yesterday, Diane Merry's had a paper published
EdM
http://www.ncbi.nlm.nih.gov/pubmed/22131404
EdM
You may not need to go immediately there, it is quite technical and its significance is not that clear without good biochem background!
EdM
But it may lead to a new mechanism to find drugs for.
loshimo11
Kennedy's Disease Chat
EdM
the treatment of KD
David
Sorry I am late to the chat, David
loshimo11
Good morning David.
EdM
Was anyone here at the meeting?
EdM
Hi David
Stan
Hi David.
loshimo11
Not me.... Had something very critical to do during that timeframe.
loshimo11
I heard that it was very informative and that everyone had a lot of fun.
Gary_KC
EdM, do you know the title for Diane's paper? I can search it by Goolge after the chat.
Stan
No, didn't go to the conference. Busy with a bunch of things; including a new grandson.
EdM
Gary, it is in the link I posted above (do you all get the linke?)
EdM
http://www.ncbi.nlm.nih.gov/pubmed/22131404
Stan
Hi TedA
carofer
sorry i missed the meeting. too far away for me.
loshimo11
Hi TedA.
TedA
Good morning from Richmond, VA
David
The conference was great, we came away with many good ideas for coping and I am already using some
EdM
IF the link does not work, simple search for pubmed and 22131404
EdM
That will take you right to it.
Gary_KC
EdM, YES, I could jumo to the URL. Thank you.
loshimo11
Ed... can you mention some of the news and highlights from the conference for the benefit of those who couldn't make it>
EdM
For me, the biggest info was the desire of NIH (DR. Fischbeck) to begin a new clinical trial within the next couple years.
loshimo11
Congrats on the new addition to the family Stan. Wish I could have one!!!
Stan
Thanks, Luis.
loshimo11
EdM, what does this new trial involve?
EdM
THere is still preliminary work to get done, but he is hoping to start a trial with either AJS-C9 (I may have spelled this wrong - I bever remember the letters!) or IGF-1.
David
I was also encouraged by the NIH hysical exercise trial, Anglea took time to conduct some of the screening at the conference I am scheduled to participate in March.
EdM
THe physician who is running the exercise study did speak
Stan
I wonder if there will ever be any clinical trials close enough for me to participate in, and that don't impose so many issues for me.
EdM
Stan, the trials will, I expect, always be performed out of NIH
TerryW
Sorry I am late
David
Hi Terry
UTE
Terry, me too
Stan
Hey, Terry, billeric, Stewart, Ute.
TerryW
Hi everyone
TedA
Hi Terry
Stewart
Goodmorning form Socal
EdM
This is due, in part, to the fact that the equipment for the varous measurements are there as wwll as the expertise on how to use them
TerryW
Stewart,  Socal land of many winds
Stewart
That's it
EdM
With regard to the exercise trial, there was a presentation on the trial, however, it is way to early for any results.
EdM
I believe that there is still time to volunteer, if you are interested.
EdM
Hi Terry
TerryW
hi ed
David
You are correct Ed they did mention that there is a need for more participants
EdM
Scientifically, there were no new startling revelations.
Stan
I discussed the exercise trial with my PCP, and he avised against it because of all my issues.
TerryW
So whats the topic
EdM
There was a good turnout of researchers, we has the usual group from NIH and Dr. Merry's lab
Stan
Conference Review, Terry
TerryW
ok
EdM
Dr Beitel from MOntreal, and a member of Sobue's lab in Japan (this is the group that ran the luperellien (sp!!) trial and a researcher from Italy.
loshimo11
I heard some rumors that next year's conference may be in New Orleans?
TerryW
Hi Bruce
Bruce
Morning, sorry I am late
EdM
Yes, the Neurosciece meeting that we piggyback with will be in New Orleans
loshimo11
Hi Bruce, how are you today?
Stan
Hi Bruce
EdM
Hi Bruce!
David
Hi Bruce
EdM
I think is a bit earlier, in October instead of November.
loshimo11
Anyone know how handicap friendly New Orleans is?
EdM
We do not have dates for the KDA meeting, but it will be either just before or just after the Neuroscience meeting.
TerryW
I have an off topic question.  I have been scheduled for a colonoscopy in a week,  do they use Anestesia during the procedure?
Stan
Yes.
TedA
Last time I was there the French Qtr has narrow sidewalks
TerryW
Hmmmm what should I say
David
When I had one done they did use an anesthesic
loshimo11
Yes Terry. Make sure you let everyone involved know that you have KD.
Bruce
Terry, talk with Mike on this.  He just had one done a couple of weeks ago.
TerryW
if its the IC type its OK
TerryW
IV
Gary_KC
Terry, YES, I took it 5 years ago.
Stan
Be Gentle
TerryW
local or general?
carofer
The anaesthesia they used for me did not knock me out, only forget things.
loshimo11
Had one two years ago. The worst part is the preparation.
TerryW
ok
TerryW
thanks
TedA
Local for both of mine Terry
Gary_KC
Terry, it is general.
TerryW
ok, that makes me feel a little less worried
Stan
Mine was a general. I gave my dr. a copy of the pamphlet a week before the procedure. No problems. The Movi-Prep was the worst of it.
funchal
Kennedy's Disease Chat
loshimo11
I guess I had general anesthisia(sp). Did not feel a thing.
David
For me it was administered by an IV and I did not go to sleep either
TerryW
I will contact the doc and let him know ahead of time
TerryW
thanks for the info
TerryW
back to topic
TerryW
LOL
Bruce
Ed, I tried to read back, but it only goes so far.  When do they think a clinical trial might be available for ASC-J0 or IGF-1?
loshimo11
When I had the procedure done, the nurse asked me if I wanted general anesthisia or the usage of a baseball bat...
TerryW
Ha :D
TedA
Time for me to go as I have to be somewhere at Noon.    Take care all.
TerryW
bye ted
Bruce
Take care Ted
Stan
Bye TedA
EdM
THere was no date mentions, but Kurt hopes to start one within 2 years
Bruce
Thanks
loshimo11
C'ya TedA.
Bruce
I see that Isabella Palazzolo is joining NIH.  That is good news.
EdM
I have not seen that -
carofer
any mention of stem cell advances at the conference?
Bruce
Perhaps I am wrong, but she is trying to get her Green Card to continue her KD research in the US.
EdM
At this time, we cannot expect any stem cell breakthroughs in the near future.
EdM
I was not doubting you, Bruce, I was impressed with your insiders information
Gary_KC
My bone desnsity was high risk for low body. My doctor recommended to take Reclast IV once a year. I took it before Thanksgiving day. My neck and shoulders became weak. I would like to say that you should be careful if you are recommended.
Bruce
Ed, I need to be questioned.  Ass-u-me nothing!  She is at Harvard right now as a research fellow and perhaps that is where she is staying.
loshimo11
Bruce, tell Isabella I can marry her so she can get her green card.... Wait.... can't do it; I'm already married!!!
carofer
Was the attendance up to par? Maybe we should re-examine the idea of videoconferencing the KDA conference.
Bruce
loshimo11 - she is too old for you anyway.
EdM
Any treatments that may be used by us older guys will come, I believe, from some sort of drug therapy.
Bruce
There were several videos made.  You can check out the first three n our website.
carofer
Gary, I took reclast in September, and I had an allergic reaction like the flu for 4 days. It was nasty, but the doctor said that it would not happen again now that I am immune.
Bruce
Gary_KC, my doctor also recommended it, but I said no after reading all the potential side effects.
Stan
The only breakthrough I saw related to stem cells, was their use in cardiac patients.
EdM
One of the nice things at the conference this year was that we were able to recognize two of the reciepients of KDA grants
Gary_KC
Bruce, I should have asked at this chat before I took it. Thank you.
carofer
Thanks Bruce, I will definitely check out the videos
Gary_KC
Carofer, Yes, I had fever, headache, muscle ache, dizziness like flu for 3 days. I stayed bed in Thanksgiving weekend.
EdM
With regard to neurological disorders, the only big success of stem cells I have read about was for multiple sclerosis.
David
I have participated in a number video conferences, I can do a little research into the subject
EdM
THe study I heard about did not use stem cells to replace nerve cells but to replace immune cells (much easier).
JACK
Hello to all
David
Hi Jack
carofer
how much have treatments for MS transferred to KD? Any?
EdM
SInce MS is an autoimmune diesease, this apparently stopped the autoimmune process
EdM
The disease really have nothing in common with regard to their cause and treatment
EdM
So while this used stem cells, the way that they were used has no application for KD and what they did is technically much more simple than what might be proposed to help KD>
Stan
That explains a lot, Ed. Thanks.
carofer
Thx Ed. Is there any stylish disease that may have transferrable treatment to KD?
loshimo11
EdM, let me tell you how nice it is to have you in these chats. Your wealth of knowledge and ability to give us info in plain English is appreciated by all!!!
EdM
THere are no stem cell treatments authorized to treat diseases like KD.  If you read of one on the web, most likely a scam
EdM
Huntington's Disease is the one stylish disease that could have treatments that are applicable for KD.
EdM
Actually, probably the main reason KD gets as good funding as it does is due to its relationship with HD
UTE
Muscle ache...weakness...I can never tell if its the KD or medicine side effects...and the doctor check ups pushing the arms and legs...don't seem to register that Im getting much weaker...I guess theres a machine out now that diabetics can rest their arm against and it reads how their protein looks.... need something new for below the surface
EdM
There are at least 8 other diseases (most of which are not well known) that have causes similar to KD and HD.
EdM
There is lots of communitcation between research groups who study all of theses diseases.
carofer
Like the other SBMA's, Ed?
Stan
I'll probably get them all with my luck.
TerryW
Hi I am back
loshimo11
LOL Stan.
EdM
Stan, they are all genetic and you would be dead already if you had them - KD is one of the mildest diseases.
Stan
I've already dies twice, Ed
loshimo11
You guys probably already know this, but since we've been good boys this year, Social Security is giving us a 3.6% increase next year. Can't wait to spend that extra money and help the economy!!!!
Bruce
Dr. Kennedy is still doing some research and also reviewing research papers.  He just commented that what we had already was good, but it could be better.
EdM
Sounds great!
carofer
It would be a great resource, but it probably would need international and non-NIH papers as well, no?
David
I know that when I was first diagnosed with KD the information on the KDA site was a godsend.  So having more information should be a good thing.
carofer
anyway, it sounds worthwhile and very helpful for amateurs as well (like me).
David
I was able to use some of the research information in working with my neurologist
loshimo11
Well... Breakfast is calling me... Gotta go. Stay healthy and upright everyone!!!
billeric
Operation timed out
Stan
Well, gotta go. Take care everyone.
Bruce
Well, I need to get busy with updating our website.  Thanks Ed for hosting this today.  It is appreciated.
Gary_KC
Bye all. Take care.
EdM
I need to leave, good bye to all
carofer
thanks a lot Ed. Very informative and helpful as usual.
David
Until next time, bye all and stay vertical.
JACK
Merry christmas to all
UTE
TKS ED