Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway."

Archives - 2015 and Older Transcripts

Topic:  Research Update from the Gordon Conference on CAG Repeat Diseases

Host:  Ed Meyertholen


Gary_KC   Kennedy's Disease Chat
edm   How was your 4Th?
Gary_KC   Good morning. This is Gary joining in from Kansas City. It is overcast with 71 degrees this morning.
Gary_KC   It was a nice fireworks in here.
edm   Hi gary, I am in Boston and it is close to 85 already
MikeG   hi Gary - 80 in Florida
Gary_KC   Hi edm
edm   I expected that the weather would be cooler in boston than at home in Virginia - apparently not
MikeG   we got lucky and the rain stopped just before 9pm when the fiireworks were due to begin
Gary_KC   MikeG, that was lucky, wasn't it?
edm   We head home tomorrow - it will be nice to get back to civilization ;-)
MikeG   yep - we had a nice 30 minute display that we watched at a neighbor's house on the lake.  It was nice to see the reflection in the water
MikeG   so the Gordon Conference went well?
edm   I also just returned from the Gordon Conference on CAg Repeat diseases
edm   I thought it was the best one I had attended - howver, there were no great new discoveries.
Gary_KC   edm, do you have any news relating SBMA that you can share with us?
edm   The conference is heavily weighted to huntington disease but the Kd group was well represented
edm   There is continued optimism that there will be clinical trial in the near future - my guess would be for IGF1
MikeG   did you get a chance to talk to the new researcher, Bahareh?
David   Good Morning All
MikeG   hi David
edm   Hi david
edm   Miek,  she is a grad student in Barcelona - fairly new in the field.
Gary_KC   Hi David
edm   there was a good discussion on patients - and the feeling that lmore should be done with regard to exercise (this was not specific to KD)
carofer   good morning from california
edm   There was a good discussion regarding big pharma - and the desire to build relationships with academic researchers.
edm   This seems to be more of these relationships now and I think that it is a good thing.
carofer   i have not heard results from the exercise clinical trial
MikeG   yes, I totally agree.  Especially from what Gene (from ISIS) spoke to us about in N.O.
MikeG   any news on ASC-J9 or JM17?
edm   There are no results yet [ the trial is still ongoing (they are looking for a few more good men!!)
edm   Mike, no -
MikeG   too bad - I thought it would be complete by now.  How many more 'good men' do they need?
edm   I did not hear a number, just that they were still recruiting
edm   There was another discussion on communication with patients
David   I participated in a conference call for planning this year's KDA conference and we are of course looking for session topics.  Ed was there anything from that CAG meeting that we should consider?
edm   There is site dealing with Huntington's  in which different researchers summerize the most recent papers in English as opposed to scientistese
edm   It is a really clever site and something I would like to steal
carofer   how about these new exoskeletons for a conference topic? demos from mfrs maybe?
carofer   got url, ed?
edm   Not offhand, but the site is called HD Buzz - shouldbe able google it
Gary_KC   edm, how about dutasteride? Any news?
edm   I spoke to some of the younger researchers and they indicated that they would like to write for us
edm   gary - no new news - there is no study currently ongoing
Gary_KC   edm, thank you.
edm   Sobue (from Japan) is still pursuing   leuperolein (sp?)
edm   There was a good discussion on clinical trial in general -
carofer   david, ekso and rewalk are a couple of names for these robotic walking helpers. see kd forum for more.
Gary_KC   edm, thank you for the information.
edm   discussing, for example, who should take part (those who display major symptoms vs. younger patients with milder symptoms, for example)
edm   It appears that all of these diseases have similar issues with regard to clinical trials - they are very complicated diseases.
Gary_KC   edm, could you please explain more detail for the discussion?
edm   There was a discussion dealing with transitioning mouse trials to humans - often, it is found that the symptoms of the disease (this was a general discussion about all the CAG diseases not just KD) that the symptoms of the disease can be delayed if the mouse is given a treatment before the onset of symptoms.  Treatments TEND to be less effective if started after symptoms start.
edm   However, most clinical trials utilize patients with symptoms.
edm   For example, in sobue's luperelein (sp) trial, there was no significant change between placebo and the drug - unless one only examined data from patients who were only recently diagnosed, then there was asmall effect
MikeG   that's too bad because most young men don't want to even be tested due to insurance issues...
carofer   it looks like clenbuterol is showing positive results. does it apply to kd?
carofer   (from
edm   Mike, and luperellein (sp ;-) is the chemical castration drug - so there is more worry about with regard to sexual side effects   That is a high price to pay when oneis young
MikeG   right!
edm   carofer, this was a pilot study with no control group.  i expect that the group will use this data to justify a more thorough, dependable study.
edm   On a side note, we did receive 7 grant proposals this year - they are just going out for review.
edm   This is the second highest number that we have ever recceived.
edm   In addition, two of younger researchers just landed faculty postions and intend to continue KD research
edm   That is always a good thing!
MikeG   great - I hope they're all worthy of funding grants!
edm   One other thing dealing with KD is that there is a growing set of experiments that suggest that treating the muscle (as opposed to cells in the spinal cord) may be effective treatments.
edm   This not only opens up new avenues but muscle is easier to 'get tp' than is the spinal cord.
edm   Mike,  many of the proposals come from good labs so it appears promising!
MikeG   I'm getting into juicing more and more... I've been hearing a lot of good stuff about Chlorella and Spirulina from people like Dr. Oz and Mercola.  Do you have any knowledge about the benefits of using herbs?  Do you have any feeling about those sorts of doctors?
MikeG   that IS good news!
Gary_KC   edm, is it a reason that IFG-1 is a SBMA candicate of clinical trial?
edm   Mike,  really know very little about them.  I doubt that they know much at all about kd so I would tend to be a bit skeptical - that, I'm afraid, is my nature ;-)
edm   Gary,  my understanding is that iGF1 has been the most promising treatment in the pipeline right now.
MikeG   I was the same but recently I've started to juice more and I'm feeling better.  We've both been trying to eat less red meat...
carofer   when you say "igf1", you are referring to the injected form, right ed?
edm   carofer, yes - I beleive that igf1 must be injected (ow!!)
MikeG   yes, the deer antler stuff is a no no.
Gary_KC   MikeG, I am eating less carbonehidred that keep me weight loss. It is easy to move my body.
MikeG   same here - I'm a firm believer in diet and exercise.
MikeG   I broke my left foot a few weeks ago and had to reallt reduce my caloric input because I was in the chair most of the day.  I'm back on the walker now.
Gary_KC   MikeG, great!
edm   There was a general feeling from those attending the conference that the patients should exercise more - this, however, was not really based on science or a trial.
edm   in diseases like KD, the lack of exercies does affect other factors (heart, for example) and weight - thus one has to be more careful about diet.
Gary_KC   edm, I agree with you. We should have some exercise the same as healthy people. :-)
David   All I know is that when I do not do my normal exercise routine regularly I have more pain and generally feel much worse.
MikeG   makes sense to me - everyone who has to go to the chair 100% has shown extreme loss of muscle within a year or two.  Especially if they don't have a regular exercise proggram like what Bruce has put together.
edm   I always can exercise better when I maintain my level of exercise
edm   If I take a few days off, I generally feel worse during exercise.
MikeG   are you still running?
David   Speaking of pain, I am waking up at night because of muscle aches, do any of you experience something similar.
edm   Mike, yes
MikeG   great!
MikeG   wish I could!!!
edm   it is awful in this heat, though
edm   David, I do not
MikeG   not any more David.  I used to have cramps and pain years ago.
carofer   no, david. but a sleep test might help identify what is happening.
Gary_KC   David, the same as MikeG for me.
MikeG   David, don't worry - it will get better... :)
MikeG   when you're 65 you'll sleep very well.........
MikeG   well guys, I've got to get going with my honey-do plans for today.  It was good chatting with everyone.
edm   I am afraid that I need to return this computer to its rightful owner, so I need to leave
edm   thanks for coming!!
MikeG   until next time - stay safe!
David   Thanks all, it's been a good chat, until next time  Stay Vertical
Gary_KC   edm, thank you very much for sharing new news with us this morning.
carofer   thank you for the interesting info, ed et al