Kennedys Disease Community
Curcumin / ASC-J9 and related items

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01-06-2012, 08:51 PM
Curcumin / ASC-J9 and related items
January 05, 2012 - How Muscle Growth is Triggered By Exercise

Ask the experts, this means that exercise can restore our muscles?
01-07-2012, 07:15 PM
Here's my philosophy about exercise (just joking Bruce):

"I KNEW Exercise was Bad...I just KNEW it!!"

Q: Doctor, I've heard that cardiovascular exercise can prolong life. Is
this true?

A: Your heart is only good for so many beats, and thats it... Don't waste it on
exercise. Everything will wear out eventually. Speeding up your heart will not make you
live longer; it's like saying you'll extend the life of a car by driving faster. Want
to live longer? Take nap.

Q: Should I reduce my alcohol intake?

A: No, not at all. Wine is made from fruit. Brandy is distilled wine, that
means they take water out of fruit a little bit so you get even more of goodness that
way. Beer also is made of grain. Bottoms up!

Q: How can I calculate my body/fat ratio?

A: Well, if you have a body and you have fat, your ratio is one to one. If you
have two bodies, your ratio is two to one, etc.

Q: What are some of the advantages of participating in a regular exercise

A: Can't think of single one, sorry. My philosophy is: No pain...good!

Q: Aren't fried foods bad for you?

A: YOU'RE NOT LISTENING! Foods that are fried these days are in vegetable oil. In fact,
they are permeated by it. How could getting more vegetables be bad for you??

Q: Will sit-ups help prevent me from getting a little soft around the

A: Definitely not! When you exercise muscle, it gets bigger. You should
only be doing sit-ups if you want a bigger stomach.

Q: Is chocolate bad for me?
A: Are you crazy?? HEL-LO-O!! Cocoa bean! Another vegetable! It is the best
feel-good food around!

Q: Is swimming good for your figure?

A: If swimming was good for your figure, explain whales to me.

Q: Is getting in shape important for my lifestyle?

A: Hey! 'Round' is shape!

Well... I hope this has cleared up any misconceptions you may have had about
food and diets.

And remember:
Life should NOT be a journey to the grave with the intention of arriving
safely in an attractive and well-preserved body, but rather to skid in
sideways - Chardonnay in one hand - chocolate in the other - body thoroughly
used up, totally worn out and screaming "WOO-HOO, what a ride!!"

For those of you who watch what you eat, here's the final word on nutrition
and health. It's a relief to know the truth after all those conflicting
nutritional studies.

1. The Japanese eat very little fat and suffer fewer heart attacks than
2. The Mexicans eat a lot of fat and suffer fewer heart attacks than
3. The Chinese drink very little red wine and suffer fewer heart attacks
than Americans.
4. The Italians drink a lot of red wine and suffer fewer heart attacks than
5. The Germans drink a lot of beer and eat lots of sausages and fats and
suffer fewer heart attacks than Americans.

Eat and drink what you like. Being American is apparently what kills you.
01-29-2012, 05:44 AM
Bruce: you know how curcumin ASC-J9, oral agents of the Department? When can we start human experimentation?
01-29-2012, 01:01 PM
Liu, the process of getting to a clinical trial is a long one for many reasons. I have written about it a few times in my Living with Kennedy's Disease blog and you can also find something in the recent issue of Quest magazine. Finding the correct dosage for a human, the best way to administer the drug, potential side effects, other safety issues, etc. all take time. The process is slow for a reason and I support it ... even though I would like to see a thoroughbred running towards the finish line.:-)
01-30-2012, 11:02 PM
Bruce Hello: we doctors told us a piece of good news,

Sanofi's Genzyme corporation with the treatment of Kennedy's disease drugs in development, be about to enter clinical stage, these are based on the gene technology research and development of biological medicine, has the very good curative effect and breakthrough.

Do you know the news?
01-31-2012, 08:52 AM
Liu, no I have not read anything about this. Be careful with anything that is supposed to be a treatment or cure. If you have additional information on this, let me know and I can send it on to NIH for their opinion.

02-03-2012, 12:49 AM
Daniel Walker
I don't have a complete knowledge about this but one news I know is Sanofi is closing a New Jersey drug research lab because it has been less productive than Genzyme’s labs, which have developed treatments for rare diseases.

This message has been edited. Last edited by: Bruce,
02-03-2012, 01:39 AM
All I know is like Genzyme corporation internal news. Is one of our suppliers to tell us, he told us to wait. To estimate the clinical not far away. If that is true, our hope is not far away.
04-29-2013, 04:41 PM
Dan B
Here's a research update.

Curcumin was found to be effective in a mouse model of CMT disease, which is a different form of muscular dystrophy.

Also melatonin was found to be protective of neurons in a mouse model of Huntington's disease. Huntington's is similar to Kennedy's only in the sense that both involve excessive CAG-repeats that result in motor neuron issues.

Frankly, I find it disappointing that neither curcumin nor melatonin can be tested for SBMA/Kennedy's disease. Does anyone know what it would take, in terms of dollars or physician interest, to have such a study done?
05-03-2013, 01:15 AM
BC Paul
I agree with you Dan and could add other drugs too. What really bothers me is that no one seems interested in establishing a KD database. Trials that do not correlate age, CAG repeat, BMI, height, weight, morbidity and a standardized strength test seem to be viewed as anecdotal at best. As people new to KD are diagnosed, I would like to have a database that lists what treatments may have kept them symptom free longer. What lifestyle choices aided or worsened symptoms. What was the secret that kept the runner who was diagnosed at 84 going? While we are waiting for the 'cure', couldn't we all participate in a standardized assessment that would at least over time give us some indication of our individual rates of decline.
07-23-2014, 04:41 PM
Hi everyone. First time poster. I was diagnosed with KD a few months ago (48 CAG repeats). I'm still feeling blessed its not ALS, which was the original diagnosis. Now that I'm settling into acceptance, I'm looking for tips from more seasoned folks as to what's working for them while I continue to remain hopeful for the current clinical trial of BVS857/IGF-1 and ASC-J9.

Does anyone have any more recent findings/results with curcumin? Also, on my own research I found that Goji Berries stimulate natural production of IGF-1. Has anyone looked into this as a possible supplement to ease symptoms?

Like many of your experiences, my neurologist is pretty passive in doing research on KD. I'm his only KD patient. So I'd like to present him and educate him the best I can with what's happening with other patients. This website, including this forum, have been very helpful to me so far.
07-24-2014, 08:48 PM
Hi I was diagnosed in 2011 like most others I went a couple of months with a diagnosis of probable motor neuron disease (ALS). So I am still and was very happy to be told it was Kennedy's after seeking a second opinion from the Mayo clinic.

I think my GAG was 42 if i remember correctly. I am 46 and still get around well play golf can run climb stairs etc I think most who saw me on the street would not hesitate to think nothing was wrong with me. but I am noticing slow changes in strength, joint pain areas in my forearm,hands and shoulders where muscle is deteriorating.

My left hand trembles somewhat noticeably when holding cups or doing any intricate work my right is starting to tremble i find myself more and more self conscience about it.

Long story short I am happy where I am at right now
and hope my body stays the same for a long time to come. When the Dr told me I did not have ALS. I never thought of time to much till then and wondered about not seeing my daughter get married or having grand children, mundane things such as tv shows and thinking to myself I may never see the ending to them or this may be my last Superbowl so I feel blessed with time.

As for treatments my Dr just has me take vitamins and I too wait hoping/praying soon for something to
help treat or cure KD.

If you ever want someone to talk to let me know I will get my ph number to you. Early on in my diagnosis I wanted to talk to anyone who had KD and see how they were doing and get a real persons view on the disease and ask if I truly did have time and get real experiences from others.

I am going on 4 years later and the fear of this disease has subsided and now I am settling in for the long haul.

This message has been edited. Last edited by: dorsey,
07-25-2014, 12:17 AM
Dan B
Originally posted by JWilliams:
Does anyone have any more recent findings/results with curcumin?

Here are some updates. First, in 2011 AndroScience Corporation was awarded a grant from the NIH to develop an oral treatment for KD. Announcement at this link, and covered on Bruce's blog at this link.

Also, in 2013 a researcher at NIH/NINDS found that yet another curcumin-related compound called ASC-JM17 was more effective than ASC-J9 in a mouse model of SBMA. Details at
ASC-JM17 can be taken orally instead of by injection, so if it is found to be effective in humans, it'll be easier to use.

I am not aware of any research into ordinary curcumin as opposed to ASC-J9 or ASC-JM17.

This message has been edited. Last edited by: Dan B,
11-13-2017, 10:15 AM
Dan B
Here's a bit of a research update on curcumin, ASC-J9, and ASC-JM17.

First, ASC-J9 appears to be no longer under investigation for KD. The reason is poor absorption into the body when taken orally. ASC-J9 is still under investigation as a topical cream to treat acne. Here's the study:

For ASC-JM17, there is some new research showing that it helped KD in both a fruit fly model and a mouse model. Here's the research paper:
The reason ASC-JM17 is under investigation, and not ASC-J9, is that ASC-JM17 is better absorbed into the body when taken orally.

This leads to the question, when will ASC-JM17 be tested in humans? No information yet. Apparently, the rights to patented ASC-JM17 are jointly owned by AndroScience Corporation of California, and by Orient EuroPharma of Taiwan, but neither company is doing a study on ASC-JM17, and neither company has posted anything about ASC-JM17 on their websites, although they have both announced that they are working on ASC-J9 for acne.

All this is very disappointing, as back in 2010, AndroScience was awarded a grant of $3.8 million from the U.S. National Institutes of Health to develop ASC-J9 as a treatment for KD, yet the project has completely stalled, so apparently the U.S. taxpayers' money not spent to any tangible benefit. Here's a link to the press release announcing the grant:
Apparently, AndroScience management believes that developing a treatment for acne is more important than KD, as they are still working on acne, but haven't published any updates on KD.

So what is a person with KD to do? Well, the development of the high absorption forms of curcumin is continuing, and there are many products available now. The easiest way to find updated information on these is to search on google or on, where they are available for sale. Search on: These items correspond to items 6, 5, and 8 respectively, from the list higher up in this thread.

Please note, the combination of curcumin and black pepper (piperine) no longer has any point. The three forms of Meriva, Longvida, and Nanocurcumin (or Nano Curcumin) are all better absorbed than curcumin/piperine.

Also please note, there is no evidence that any of these compounds has any benefit for KD in humans, or even if they are safe for you to take. (Although, as mentioned above, ASC-JM17 has been shown to be effective in a mouse model of KD.) You will have to decide that for yourself, based upon your own reading and in consultation with your physician.

This message has been edited. Last edited by: Dan B,