Vatiquinone (EPI-743) a possible treatment for all ataxias.

[sunvox]

There was a post on LivingwithAtaxia.org that got me looking at research being done by Dr. Susan Perlman as she is set to be the keynote speaker at the 2019 NAF Conference in Las Vegas this year, and someone asked about what topic might she be speaking. When I searched for her work I found this:

Safety and Efficacy of EPI-743 in Patients With Friedreich's Ataxia

clinicaltrials.gov/ct2/show...

EPI-743 (Vatiquinone)

friedreichsataxianews.com/f...

This drug is in multiple clinical trials for multiple neurological disorders, and the preliminary results showed some benefit in several different disorders. It is NOT a cure for any disorder as it simply works by improving cellular survival. It does NOT impact the underlying causes of any illness.

At first, I admit I was curious and encouraged, but the more I learned about this "drug" the more angry I became. Vatiquione is a man-made form of vitamin E. Vitamin E was found to be helpful in animal models of Friedreich's Ataxia, but the pharma industry can't patent vitamin E so they made a synthetic version. Did they test this version against "natural" vitamin E? No. Is this new drug going to be cheap? Of course, not. It's forecast to cost thousands per month for a pill of man-made vitamin E, and insurance companies will pay because the first illnesses they are treating are childhood disorders.

The self serving research with no regard for what's best for patients and the world makes me sick. The more time I spend researching and contacting researchers, the more cynical I become.

In the end though I have found a new supplement that I need to study. Vitamin E has been implicated in problems related to taking too much so I'm not running out and buying a bin of the stuff tomorrow, but for sure I have this weeks research topic. Standby for a post on vitamin E

Natural forms of vitamin E: metabolism, antioxidant and anti-inflammatory activities and the role in disease prevention and therapy

ncbi.nlm.nih.gov/pmc/articl...

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One final point I would make is that my alternative therapy relies on attacking neurological illness from as many angles as possible. One angle that I use are natural, proven anti-oxidants namely curcumin, blueberries, and green tea only I take them in supplement form namely Theracurmin, Pterostilbene, and EGCG. I would note that the first two are man made with the exact intention of doing what vatiquinone is shown to do namely act as a potent anti-inflammatory and anti-oxidant and vatiquinone appears to be helpful in MULTIPLE neurological disorders.

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Is it possible other potent anti-oxidants are equally or maybe even more beneficial?

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I, personally, believe the answer is yes.

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Joe in NY

[Stanleyclan]

Morning Joe....thank you for sharing! X

[sunvox in reply to Stanleyclan]

Morning! When I posted I thought of you waking up Monday morning and finding a new post to read, and it brought a smile to my face. Thanks. Joe

[PeteW]

And:

Choline

Arginine

Tyrosine

Glutamine

ALC

ALA

NAC

Acai

[simon111]

Hi joe

Would those supplements be suitable for my 15 year old son who has friedrichs ataxia

Thank you

Mary

[sunvox]

The one clinical trial of ataxia that is using Vatiquinone and has some evidence of efficacy is studying patients with FA. I am not a doctor so please speak with a professional before adding anything to your son's current diet or list of supplements, but, yes, my opinion is that a powerful anti-oxidant may be helpful. I do not have the link to the research at my finger tips, but as a cautionary note I remember reading a paper that said the use of more than one anti-oxidant can cause interference in the benefit. My personal favorite in the category is Theracurmin, but I would most definitely discuss a vitamin E supplement with your son's doctor and show him the information on Vatiquinone to be sure he is familiar.

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integrativepro.com/Products...

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Curcumin nanoparticles attenuate neurochemical and neurobehavioral deficits in experimental model of Huntington's disease

ncbi.nlm.nih.gov/pubmed/240...

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curcumin encapsulated solid lipid nanoparticles (C-SLNs)

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C-SLN-treated animals showed significant increase in the activity of mitochondrial complexes and cytochrome levels. C-SLNs also restored the glutathione levels and superoxide dismutase activity. Moreover, significant reduction in mitochondrial swelling, lipid peroxidation, protein carbonyls and reactive oxygen species was observed in rats treated with C-SLNs. Quantitative PCR and Western blot results revealed the activation of nuclear factor-erythroid 2 antioxidant pathway after C-SLNs administration in 3-NP-treated animals. In addition, C-SLN-treated rats showed significant improvement in neuromotor coordination when compared with 3-NP-treated rats. Thus, the results of this study suggest that C-SLNs administration might be a promising therapeutic intervention to ameliorate mitochondrial dysfunctions.

[suzie44na]

Hi, I read about ataxia with vitamin E deficiency (AVED), the treatment was vitamin E supplements

Suzie