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Canadian Association for Familial Ataxias (ACAF)

Claude St-Jean Foundation

Friedreich's Ataxia

 

“Promising Trials ahead”

 

This article has been drawn from the Eldorado (publication of April 2006).


FARA (Friedreich’s Ataxia Research Alliance). His president Ron Bartek, makes very promising researches coming from scientific projects being actually directed including those that will make the object of clinical trials in the next year.

It is most likely that the efficient treatment will be will be a 'cocktail' including drugs that are being tested now and in the future.

Let's take the substances one by one:

  • Idebenone: The trial in phase 2 at the (National Health Institute) goes off smoothly with the 48 participants and some more in case they are needed. Idebenone will enter the phase 2 and 3 of the trial in Europe in few months. This trial will be conducted by the Laboratory Santhera who provides Idebenone used at the NIH. We have often qualified Idebenone as being an antioxidant, "a free radicals extractor" which without it will damage the cells. Even if it is an antioxidant in a certain way, it seems to be more evident that it can also be something else. It seems to be probable that Idebenone can also help so well electrons along the mitochondria inner membrane that more energy and less free radicals are produced.
  • Mitoquinone: Clinical Trials in the phase 11 are planned for the first semester in the next year in Australia (Martin Delatiky at the Mordoch Institute) and in California (Sue Perlman UCLA Los Angeles). Mitoq is Coenzyme Q 10 more a little additive that is the same to Mitochondria. Mitoq's specialists are hoping that will have the effect of a very efficient antioxidant because it concentrates at more elevated doses a way more than in the mitochondria to block the effects of free radicals where they are produced and before they cause any damages.
  • AOOO1 (Edison Pharmaceutical Laboratory). An attempt is made in the elaboration of a clinical trial in the phase 2 on this molecule in the half-next year. FARA has granted 3 million dollars for the development of this point. At the head of this particular effort of pharmaceutical development, are the Dr. Guy Miller d'Edison, Dr. Rob Wilson of Pennsylvania's University and Dr. Sid Hetch of Virginia's University. These scientists claim that AOOO1 is introduced inside the mitochondria, which facilitate the transport of electrons with more fluidity along the mitochondria membrane in a way to produce more energy and less free radicals. Such flux of electrons is normally accompanied with frataxin protein. Because the electrons along the mitochondria membrane have the tendency to accumulate and to escape prematurely free radicals are produced and the process of energy production does not arrive in time. In fact, these scientists believe that there are big chances for the molecules as AOOO1 can compensate the deficit of frataxine and produce a significant rise of energy and an important reduction of oxidative stress.
  • Substances that are able to increase fratixin level. FARA closely follows and works head onto 2 promising projects of the same type. One is leaded by DR. Joel Gottesfeld at Scripps Research Institute of Jolia, California with the help of several bourses from FARA. His project is promising because the compounds he is using are seems to increase the frataxin level in cell cultures in patient blood at equal levels or even higher, that the ones of their brother and sisters, healthy bearers. These compounds act upon the mitochondria but inside the cell nucleus on the chromosome that contains the gene of AF.

Dr. Barbara Shelber conducts the other project in Austria with the help of many grants from FARA and "Seek a Miracle". In this project, a substance, called EPO, is utilized on blood cells, cardiac, nervous, with apparently resulting with the elevation of 2 to 5 times the level of frataxin. The doctor is still not sure how is acting this substance that allow reaching promising results. She works hard to put in place a clinical study with AF patients. She just wrote FARA asking them to send her scientific articles.

Those two projects aiming to raise up the frataxin level use compound already employed in other diseases or are being the object of other clinical trials for other diseases, thus if they continue to show such promising results for AF, scientists could utilize it more efficiently in specific trials. Already, innocuity test have been perpetrate on animals and have been administrated to humans. Clearly this approach of frataxin increment could progress rapidly.

The potential benefit for frataxin increment in these two projects is enormous. As we know carriers have a level of frataxin inferior to non-carriers but they are healthy. Since then our patients could enormously benefit from a possible increase of their frataxin level reaching of even exceed the one of their siblings, healthy carriers.

Not realized yet but we are on the right trail!


Although we shall keep in mind that culture cells are not people. There is a lot to do yet, so that culture can be reproduced on patients without danger, these projects are extremely promising and are going fast.

Since then, we can imagine to what extent it will be exalting to see the development of a "therapy cocktail" involving anti-oxidants "cleaning up" into free radicals even in the case of unhabitually low case of frataxin and its compounds increasing the level of frataxin. These scientists begin to think that such cocktail could stop the progression of the disease.

Ron Bartek - FARA 11.05
(American Association for Research on Friedreich’s Ataxia)
fararesearch@yahoo.com