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Posted

Hello all,

Question: I heard about a new drug that they were working on sometime back

called Avicena. I looked it up and sure enough there's a website

www.avicenagroup.com and it's disease target is CMT. I've asked my doctor about

it and he's never heard of it. I'm too cheap to go to a neuorologist (I also

have issues dating way back) so I'd like to ask anybody that might know anything

about this. Is it on the market? Has anybody used it?

Posted

This is my report of the Avicena and Creatine study that was done by

CMT Dr. Chetlin. I was asked to write this study review by the

President of HNF, I agreed and also interviewd Dr. Chetlin about it.

Funding is currently (August 2006) stalled for future studies. My

report is below for information and currently can be found under our

FILES section under the " Research " category.

~ Gretchen

Avenica, Creatine and CMT

By Gretchen Glick 11/29/05 copyright TFHNFORG

The Avicena Group, Inc., based in Palo Alto, California is a

biotechnology company focused on developing products that improve

patient's lives by regulating critical cellular energy processes. Two

technologies have been developed; the first to address cellular

energy modulation; and the second to address cellular energy

transport. Efforts by the Avenica Group are focused on orphan drugs

for neurodegenerative and neuromuscular diseases, such as CMT.

Together with the Avicena Group, Drs. D. Chetlin and Laurie

Gutmann West Virginia University School of Medicine have provided

their results from a pilot study of a creatine compound, that

demonstrated a significant increase in muscle size, as well as in the

level of total muscle creatine concentration. Drs. Chetlin and Gutman

were introduced to Avenica Group by Dr. Tarnapolosky of McMaster

University in Hamilton, Ontario, Canada, who has completed

substantial research in the use of creatine for CMT.

Chetlin's team said these findings first indicated that treatment

with the creatine compound may lead to increased muscle strength and

increased aerobic capacity, as well as an overall reduction in the

severity of disease symptoms.

The compound used in this study was creatine monohydrate and was

supplied by the Avenica Group. Creatine is a naturally occurring

biochemical that is necessary for immediate energy metabolism. It is

a derivative of three amino acids: arginine, glycine and methionine.

ONLY CMT PATIENTS were used in this pilot study.

According to Dr. Chetlin, lead researcher, " although the use of

creatine demonstrated some promise as a nutritional supplement

intervention for CMT, the strength-training exercise protocol we used

appeared to be more effective than the supplement itself. " Dr.

Chetlin added " most of the patients in this study had CMT 1A. "

Chetlin contined by stating that " CMT is probably the most enigmatic

of all the neuropathies and predicting creatine's effectiveness in

CMT is inadvisable because the disease expresses itself in highly

variable fashion, even within the same subtype. " This means it is

still unknown how creatine supplementation would effect types other

than CMT 1A.

When asked if muscle strength and aerobic capacity could be

increased in persons with CMT, and would those who do not exercise

now be able to engage in exercise programs after supplementation with

the creatine – Dr. Chetlin replied " The answer to this question is

not known. However, it is unlikely that creatine alone

would " prepare " a person for exercise. One of the big problems we

discovered with our patients was that many led a sedentary lifestyle,

exposing them to increased risk for coronary artery disease. Like

other inactive populations, we believe that persons with CMT should

engage in regular activity, when and where possible, to avoid

complications associated with inactivity. "

Dr. Chetlin warns that creatine is NOT a cure for CMT. It may, in

certain circumstances, permit some patients to improve exercise

performance and capacity. Creatine has also long been thought to have

nerve-protection properties as well. For a history of Creatine and

more information visit http://en.wikipedia.org/wiki/Creatine

CMT persons should have their serum creatine levels checked through

routine blood tests at an annual general physical exam done by a

doctor of Internal Medicine. Lower than normal levels may indicate

the need for creatine supplementation and discussion with one's

doctor should follow before any supplementation takes place. Creatine

monohydrate is available commercially, over-the-counter, in powder or

capsule form.

Funding agencies that have received proposals for further CMT

Creatine studies have said they are not interested in examining the

use of creatine in CMT patients. Dr. Chetlin concludes, " therefore,

at this time there are no future study plans for creatine in large

groups of CMT patients. "

Securing additional funding for important studies like this is but

one goal of HNF-cure.org We will continue to bring you the very

best in research news updates in the coming year.

Posted

Thank you, Gretchen. I wonder if you can keep me posted if you hear anything

else?

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