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I attended a conference at UC Davis in Sacramento California over the holiday weekend. This is the same clinic that my son attends. i have the upmost respect for dr. Craig McDonald who is the primary presenter at the conference.
I was absolutely floored by the results he presented from a biotechnology company called Cardero and a substance called epicatechin in 6 Becker patients. it was only an 8 week trial so there is simply looking at biomarkers and not functional results. But the biomarkers were uniformly positive cross several dimensions including follistatin myostatin and so forth.Dr McDonald then indicated that he was looking for research dollars to apply this to Duchenne. I strongly encourage PPMD to look closely at this project.

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I've attached the agenda from the conference, the presentation titled "Mitochondrial Biogenesis in NMD".

Attachments:
Here is what they used in Becker trial
http://druginfo.nlm.nih.gov/m.drugportal/ProxyServlet?mergeData=tru...

A preliminary finding discussed at the conference was that the positive epicatechin seemed to have a significantly larger treatment effect then negative epicatechin.
Interestingly, one can purchase negative epicatichen online or so it seems.

http://mdxmuscle.com/product/mdx-
muscle/follidrex-30-servings.html

Hi David! I am interested in epicatechin. As you said you were on the conference. i have some question. May i ask you?

Hello David!

Do you have the slideshow of the "Mitochondrial Biogenesis in NMD"? That would be great to analyze.

I tried to collect some infos about this trial, but i cant find to much on the web.

- Can EPI regenerate, repair the skeletal and cardiac muscle, decrease fibroses? How?

- How can Epi inhibit myostatin and how can it increase follistatin? If it really able to change the operation of these it is greatfull. There are some trial like follistatin therapy or pfizer's myostatin inhibitor. Epi would be able to change all these together in the same time?

- Did they check the CK level from blood test?

- Is this drug a life treatening one? Or the period of taking is limited?

- Did they used the + and - epi together or separetly?

- Did the NMD patients experienced changes in the muscle strenght or walking ability? I know it was a really short study, but probobly there was some improvements.

-  Whats could be the side effects?

 - How the NMD practicipants had been taking the drug. I mean what was the dosage, and how many times a day?

- Did the patients used any other supplements which could help the process of EPI treatment: growth hormon, amino acids or vitamins? 

:))))

i hope you understand all of my questions.

Do you give EPI to your son?

THX

Hi

I do not have the slideshow. In fact, I was lucky to see any of it as I arrived late; fortunately the conference was running late too.

I will give you my non-expert answers as I can. I've also asked the conference coordinator from last year if she can share the slides.

- Can EPI regenerate, repair the skeletal and cardiac muscle, decrease fibroses? How?

Yes, it did regenerate and repair. How? really don't understand it myself. What I remember is that the treatment had the same effect one my expect if a healthy person, who was otherwise out of shape, started exercising vigorously for a few weeks. The muscle growth and blood flow, etc. looked similar, despite the fact the patients had Becker.

- How can Epi inhibit myostatin and how can it increase follistatin? If it really able to change the operation of these it is greatfull. There are some trial like follistatin therapy or pfizer's myostatin inhibitor. Epi would be able to change all these together in the same time?

I don't know enough about how it impacts mystatin/follistatin. Maybe it would be used in combination, I don't know. But I don't think the biological mechanisms are related.

(Wish I had those slides. I've seen so many DMD presentations I don't trust my memory anymore)

- Is this drug a life treatening one? Or the period of taking is limited?

Yes you would have to take it all the time.

- Did they used the + and - epi together or separetly?

They had specific but very preliminary results which focused on positive +epi. That was maybe the most exciting possibility, as the treatment effect of +epi appeared significantly greater.

- Did the NMD patients experienced changes in the muscle strenght or walking ability? I know it was a really short study, but probobly there was some improvements.

They were careful to say "we didn't measure functional improvements" mainly because the trial was so short. But they also gave everyone the impression that improvement was seen.

-  Whats could be the side effects?

No clue. 

 - How the NMD practicipants had been taking the drug. I mean what was the dosage, and how many times a day?

Sorry, don't remember.

- Did the patients used any other supplements which could help the process of EPI treatment: growth hormon, amino acids or vitamins? 

Sorry, don't remember.

probobly this what we are looking for:

SLIM2 cianidanol powder

my son have been taking follidron for 2 months. His upper body is stronger, especially his hands and his hand grip. I bought a hand grip dynamometer. :)

Follidron is - (-) Epi, but as you wrote + (-) Epi is significantly greater. This while i wanted to find a supplement from cianidanol.

have you read this?

http://www.google.com/patents/WO2013142816A1?cl=en

I have read the link. Cardero was the sponsor of the UCD study too.really like those guys they seem very focused on NMD.

We will look into Follidron, but how to know it's real? The supplement industry is really sketchy!

Yes your are right about the supplement industry, this is why we should choose the most reliable. I checked some discussions about follidron and wrote some emails to the developer. He claims that the indegrients is high purity and safty. you can write him email.

if i click the cianidanol subtitle in the text here: https://clinicaltrials.gov/ct2/show/NCT01856868  ( you know well this site) i can find the SLIM2 cianidanol powder

http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=1602be4e-8d...;

It seems for me this was what they used in the study.

If you read the patent's 118-127 pharagraps you can find some information about the therapeutic agents. This is not clear for me. Does it mean that epi works better togheter whit these? what do you think?

Do you remember if did they talk about the bone density and epi interaction?

Again I'm not an expert but it was my understanding that the substance used in the trial was a MUCH higher grade, and only enough for the Becker study was manufactured.

We have meetings with Craig and his team next month and are excited to learn more. We will update the community as soon as possible. Thanks for sharing what you’ve learned David!

 

Wonderful news. It is a quite a team! One such member spent his Sunday morning running a 10k for ppmd run for our sons with me and my son, just a few days ago. Strong winds and buckets of rain met us there, but smiles were all around.

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