| 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 |
