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2008 Conference
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Location: Michigan
Registered: 08-29-2008
Posts: 58
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I was just wondering how the Conference was.
Picture of MikeG
Location: United States
Registered: 05-18-2007
Posts: 6
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This year's conference was another super education in biology and neurology. We have all learned more about KD at these conferences than we ever imagined thanks to the good teaching ability of Ed Meyertholen. His explanation was a perfect primer for the doctors and researchers who followed – we could all actually follow what they were talking about!
Dr. Taylor spoke to us about the importance of KDA grants in keeping the KD research going. A KDA grant is a very coveted thing for researchers!
The dutasteride trial was ending as the conference began on Wednesday, November 19th as the last person in the trial was being evaluated. Data will be locked and results should be available in about three months or less. Each person in the trial will be advised whether they were on the ‘real’ thing or a placebo in a month or so.
Dr. Chang, from AndroScience Corporation, spoke about his research with ASC-J9 and KD mice. Through a KDA grant he was able to perform experiments with KD afflicted mice that were given ASC-J9 injections and the results were astounding! The KD mice without the J9 treatment would drag their butts around the cage and were not even able to get IN the mouse wheel whereas the J9 treated mice not only ran the wheel but were climbing up the cage walls and hanging upside down from the top of the cage. Also, the J9 mice were able to reproduce normally whereas the KD mice without the J9 treatment were not. Read my lips: NO SEXUAL SIDE EFFECTS! (Sure beats castration…)
Heather Montie was awarded a $50K research grant to study the role of acetylation of the androgen receptor (AR) in spinobulbar muscular atrophy (SBMA). Heather Montie, Ph.D., is a postdoctoral fellow in the laboratory of Diane Merry, Ph.D. at Thomas Jefferson University. Her family is directly affected with KD so she has a definite incentive to find a cure for Kennedy’s Disease!
All of the doctors and researchers who spoke gave a very positive statement concerning finding a cure for KD based on the fact that they now understand exactly what is causing the disease and are now examining ways to combat the effect of the aggregate accumulation of the mutant polyglutamine androgen receptor. This disease differs from others in that it can now be reproduced and cured in animal models!!!
Here are some KD Therapeutic Targets that already have been put to trial: Leuprolide & Dutasteride, and some that are possible future targets for trials: Heat Shock Proteins 17-AAG and 17DMAG, mutant androgen receptor degradation with ASC-J9, androgen receptor modification with IGF-1 and exercise, mitochondrial dysfunction with CoQ10 and Idebenone.
The men had a vary informative break-out session led by John Coakley and many topics were covered including exercise, speech therapy, insurance concerns, SS disability, dependence on caregivers, and sexual dysfunction.
The women had their own breakout session led by Paula Goynes and she reports it was a BIG success with many women coming up to her to discuss matters in private after the regular session was over.
Location: Michigan
Registered: 08-29-2008
Posts: 58
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Mike, Thanks for the update. My husband and I were not able to attend this time but after reading your reply I really hope we will be able to attend future conferences. Your reply is very positive and encouraging and sounds like you came away with a wealth of knowledge! Sometimes during the monthly chats, it becomes difficult to follow because everyone has many different things they want to discuss so I really do appreciate your reply in the forum space! I personally don't understand all the scientific language but the fact that there seems to be more hope is a wonderful thing! I will make sure my husband reads your response as I'm sure he will greatly appreciate the clear and straight forward information you have provided. Thanks again!
Picture of MikeG
Location: United States
Registered: 05-18-2007
Posts: 6
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You are very welcome. I hope to see you next year in Chicago. That's where we attended our very first KDA conference in conjunction with the FSMA conference there in 2001. It was good to meet all of the people I had only talked or chatted with. And to actually meet and talk with Dr. Fischbeck and Dr. Merry - wow!!!
I believe the KDA conference will be in October next year - 2009. Stay tuned for the dates.
Here is some more data on Dr. Chang's ASC-J9. This URL may need to be pasted into your browser address window - I'm not sure it will be clickable...
http://www.urmc.rochester.edu/ChangARLab/ChangPapers/english.pdf
In any case, you should be able to find all sorts of info on it by using a GoodSearch and the keywords 'chang asc-j9'.
Location: Michigan
Registered: 08-29-2008
Posts: 58
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I will start planning now! Chicago should be much more convenient - only about 4 or 5 hour drive and we can take Amtrak quite easily from where we live. Hopefully the dates will work out with my work schedule!

Thanks for the info!
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 161
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Here is a link to the ASC-J9 research paper:
http://www.urmc.rochester.edu/ChangARLab/ChangPapers/CV262.pdf

ASC also has a drug in the pipeline ASC-M5 that might someday be an approved oral drug. I kind of doubt that ASC-J9 will ever be approved (even applied for later stage trials) in a form useful for SBMA folks. In fact I can't see any SBMA specific drug/therapy ever being approved in the US under the current regulations regardless of how effect it may be. Hopefully I'm wrong.

I don't expect much from the Dutasteride trails mainly due to the slow and uneven progression of SBMA. Worst case would be they will conclude it is ineffective. From personal experience I can say that it most likely has been effective for me.


=================
email:rheitzman at gmail
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Registered: 09-28-2005
Posts: 654
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Have you ever wondered why the KDA rotates its conference destinations?

The Society for Neuroscience's (SFN) annual conference is the largest gathering of neurologists in the country. Thousands attend each year. Our Scientific Review Board felt that if the KDA held their conference right before or right after the SFN's conference, we would have a greater participation of neurologists at the KDA conference because they would already be attending the SFN conference.

The SFN rotates their conferences between the East, Midwest, and West each year. This year they will be in Chicago. Next year they will be someplace on the West Coast.
Location: Michigan
Registered: 08-29-2008
Posts: 58
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I'm glad that they are rotated. It gives more people the opportunity to attend. I was looking forward to attending the Chicago conference (closer to home) but with things the way they are at the moment, it's not looking too promising; but a lot could change between now and October! (Hopefully for the better!)
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