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Lilacs53

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I'm not sure about it and would like to know what you all think about it.

Here it is...


December 16, 2014


Dear ALS Fighters and Families:

There is an opportunity for us to expand WFND’S current therapy program for PALS (People with ALS) and to totally stop ALS progression. Although not a cure, this new therapy will buy PALS time until a cure is found. By expanding the current therapy regimen to include another supplement, we believe research will prove that beginning this therapy will stop the disease in its tracks. The problem is the supplement in question, glutamate oxaloacetic transaminase (GOT), does not exist for human consumption. Please take a moment to read this letter to better understand the importance of an updated therapy program to include GOT and the Deanna Protocol™(DP), and to see how you can help.

The Deanna Protocol™, which is part of the WFND Program for ALS, supplies energy to cells to keep them from dying. This has been proven via anecdotal evidence from PALS, and via mouse studies. When the cells die, they release glutamate into the extracellular space, which kills the contiguous cells. If we can supply enough energy to the PALS to stop the cells from dying, we can prolong their lives. However, if too many cells are dying, we cannot keep up with the cell death by supplying energy alone. Therefore, it is imperative that we neutralize the glutamate.

Research already done at the Weizmann Institute in Israel has found a method to neutralize glutamate using GOT and hence, stopping the spread of ALS. There is enough anecdotal and research evidence indicating that the combination approach of the DP and GOT will totally stop the progression of ALS. There is a supplement, oxaloacetate, currently on the market that neutralizes glutamate, but it is extremely short lived in circulation and not nearly as effective as GOT.

At this time, GOT is only made for research and not for human consumption. WFND has funded a research study on ALS mice, which will test the combination of the DP plus GOT to determine if the results are superior to using only the DP. Based on previously performed research on the DP and GOT, individually, we foresee a positive result where these substances will work together to stop ALS.

We need funds in order to partner with an investigational pharmacology department at a university or perhaps a pharmaceutical company to make GOT for human consumption. Since GOT, like the DP, is a naturally occurring substance, we may not be able to raise the interest of a pharmaceutical company concerned about a return on investment. Once GOT is available for human consumption, we intend to conduct a clinical trial, which we fully expect to result in the cessation of ALS progression. A holding action until a cure can be found.

We are the only non profit foundation whose research is based on cellular metabolism. We are the only non profit foundation whose research is working with substances normally found in the body. We are also the only entity, which has proven it can offer an effective therapy to slow the progression of ALS. All other research, currently in progress, is based on finding a pharmaceutical drug to cure ALS. This is important. This is necessary, but it will NOT help those currently fighting ALS as time is of the essence, and drug trials can take years.

We are outside the mainstream of neurology, and we have neither received nor do we expect to be offered funds from the National Institutes of Health or the ALS Association. None of the $110 million and counting that the ALS Association collected from the ice bucket challenge will be awarded to us.

I plan to donate $10,000 to fund this research, but that is not enough. I am asking for donations in any amount to help fund the production of GOT for human consumption and in turn, it will give PALS the hope of stopping ALS NOW. Donations may be made by going to ] and clicking the donate button on the left side of the page. You may also mail checks payable to Winning the Fight to the address listed below. Donations are tax deductible to the fullest extent allowed by law.

Please, give what you can. Please, give generously and give in honor of the PALS in your life. Give so that no one will ever have to give in memory again. Give for the honor of knowing that one day you can say YOU helped fund the treatment that stopped ALS and that together we did win the fight.

Sincerely,
Dr. T.
Vincent M. Tedone MD FAAOS

Copyright © 2014 Winning The Fight, Inc., All rights reserved.
 
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Nikki J

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I realize you are not fundraising but removed fundraising links as they are very strictly not allowed.
I am not a fan of Dr Tedone. There has been a lot of buzz about the protocol and some people swear by it
I personally am sending my money elsewhere
Edited to add
I went and looked at this again. There is nothing to guarantee that I can see that the money is going where he claims. You would be donating to winning the fight and trusting it is used for what he says. I do not believe that this is a charity that has any oversight at all
 
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hjlindley

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I am not a fan of the Deanna protocol or the good doctor. Check ALSUntangled.com - Home for a good scientific review of the protocol. I worry about the cost, the purity, and efficacy of the system. To each his own but I'm not going to throw my money down a dark hole.
 

Atsugi

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Couple of things that I normally avoid saying on this site, but I guess I need to pipe up now.

I've never been a fan of the "take vitamins to cure ALS" crowd. There's no solid research to say it has any hope of working.
Trusting an Orthopedic doctor to cure ALS is like asking a nautical engineer to design an airplane.
When I looked into it months ago, it appeared to me that Dr Tedone and Winning The Fight were offering false hope to current PALS.
The sales arms and the research arm are linked tightly--one guy. That compromises integrity of research.
My money goes to government sponsored ALS researchers doing internationally recognized research, not to an old guy in Tampa without oversight.

Just my personal opinion. Others may have seen benefits from DP that I'm not aware of.
 

MaxEidswick

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>Couple of things that I normally avoid saying on this site, but I guess I need to pipe up now.

I've never been a fan of the "take vitamins to cure ALS" crowd. There's no solid research to say it has any hope of working.
Trusting an Orthopedic doctor to cure ALS is like asking a nautical engineer to design a computer.
When I looked into it months ago, it appeared to me that Dr Tedone and Winning The Fight were offering false hope to current PALS.

Ditto that!
 

ECpara

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I agree hjlindley and Atsugi. I read a few reviews on one of the sites. The PALS sounded so encouraging when they first started but as you read down they still have disease progression. I think it's a big waste of time and money.
 

Lilacs53

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Thank you for your replies. I had a feeling that it was bogus, but was just holding on to a glimmer of hope. My husband just said that when a cure is found we won't have to dig around for it, that it will be front page news. Hopefully that will be soon.
 

cheerleader

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And until that day, just try to make every day count! That's all any of us are guaranteed!
 

Atsugi

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Every day that I wake up on this side of the dirt is a good day. Seize it.
 

lgelb

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If blocking glutamate was all we needed to do, it'd already be done. That approach tried and foundered. The mechanism of disease has been demonstrated as more complex.

If we added up all the one-trick ponies in ALS, think how much money, time and energy could be redirected to the more boring, complex scut work of sorting out the phenotypes, genotypes and most promising disease targets, probably requiring multimodal therapy as do many types of cancer, cardiovascular disease, other neurological diseases.

This is a decent summary of where we are. Of course, being sponsored by Les Turner means a bit of cheerleading for an academic paper.
 

affected

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I think that the first 1 - 3 months after diagnosis are an incredibly vulnerable time. The shock, the denial, the fear and a mountain of other variables have us reeling and we wildly turn our head this way and that looking for that escape hatch.

This is where anything that offers that cure or to stop progression, suddenly seems like maybe it's that hatch.

Unbelievable to me that someone can make a living by offering false hopes, but that's the world we live in.
 

rknt50a

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Let the data speak.

If Tedone would simply have PALS taking the DP post their data regularly in a public place, other PALS would have information to make decisions. Anecdotes and theories are not data.
 

Jeffreyp

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What is the basis for saying Dr Tedone does not sincerely believe the protocol is helpful. What is basis for implying Dr Tedone is making any money from the protocol--he does not sell the supplements. The website says all donations go to research--does anyone have information to contrary. I read the ALS untangled and saying there is some science behind it and it deserves study. If Dr Tedone is not making money from this, lets applaud his effort to help, not attack him.
 

Nikki J

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I read alsuntangled as saying no evidence that it works and they would not recommend it unless such evidence is produced. The links on the winning the fight website are not to peer reviewed journal articles.
Dr Tedone is asking for money as an unrestricted donation to winning the fight. I think the burden of proof is on him. Even if his motives are pure I am not convinced by his science.
Everyone has to make their own decisions; we all long for a cure or at least a treatment. As I said above my money is going elsewhere because even if this is good faith I do not think this is going to be the answer. As Laurie says there is a LOT more to the puzzle
 

Jeffreyp

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That is the point--let everyone reach their own conclusion based on the science information that is out there--people should no be suggesting the doctor has a profit motive when there is absolutely nothing to suggest that.
 
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