[sites.google.com]

Looks pretty amazing, from what I can tell.
Melissa

This sounds suspicious to me. It looks like a profit-making organization, not a research foundation. Marsha?

Will

This is a big scam... untrue in every way but will be happy to take your money. The "research" is not research.. there are no doctors, just homeopaths who have no right at all to express themselves about HD or probably much of anything. And just in case you think "can't hurt might help", they just got done putting a putting a woman in the hospital with botulism with some watermelon jam. These people are from B.C. Canada and Canada is the the only ones who can shut these people down.

Thank you Eric for tracking this down so quickly. You are absolutely correct that clinical trials need to be regulated. That means that an institutional review board should carefully review the study and make sure that it's warranted based on preclinical data and is ethically designed. Medical doctors should check on participants safety and possible safety issues reported immediately.

I do support the idea of supplements being tested. Dr. Lavonne Goodman did a therapeutic trial of a group of supplements. It was approved by an independent IRB and supervised by each participants doctors. It's a good example of how it can be done.

I always recommend that patients trying supplements discuss them with their doctor and visit regularly for monitoring.

In addition, it is a good idea to use supplements that have been tested by Consumer Labs or other independent labs to make sure that they are not contaminated in any way.

Oh gosh, than you So Much eric and marsha. Melissa, this is a huge scam. I'm sorry, i've known about it for a long time, and so has our hd clinic. They were finally exposed a couple of weeks ago on our news, and i should have posted about this. I will look later for a link for the global news story. They are actually an hd family that go to our clinic,they are quite symptomatic from what ive seen of them when ive seen them fundraising at various stores out here, and the funds they raise go in their own pocket, to support themselves. When ive approached them, and said where exactly is the money going, they refuse to answer, and immediately shut down their stand. The guy leading this has a criminal record, and the socalled foundation is in arrears.

Well, ive been looking for a link to the news story that aired a couple weeks ago about this group, but wasnt able to find the link, oh well. What i can say is i've also been told that they've been seen taking money right out of their donation bucket, into their pocket, and then buying groceries and stuff. Sad really, they have hd and it shows.

Well, what i have come up with, is a more direct link, to the page on their website that talks about this so called clinical trial, they call it a health study.
[sites.google.com]
They say right on this page, that they formulated this product themselves, and that their purpose for this free study, is all those that receive it for free, must give a testimonial as to how it helped them, so they can validate their product. It's obvious they are doing this so they can sell it in the future. You must go to their so called doctor, who is a herbalist. Oh theyll even take you there themselves. Actually this really alarmsw me, because this isnt a clinical trial, but it's being promoted as one. And when this story was aired on our local news, it was only about their false fundraising, so this whole thing of them having trials is news to me too. I'm glad you posted this melissa, because now ill be contacting some people about this, this is a big concern



Edited 1 time(s). Last edit at 03/24/2011 03:14PM by Barb.

I found it! I found the news hour video that was on our news couple weeks ago, about this group, but it also shows our hd clinic in the story

[www.globaltvbc.com]

Ok, this link works now, it's the very first story on the news



Edited 1 time(s). Last edit at 03/24/2011 05:07PM by Barb.

BTW Melissa, I have been taken before... just a couple of weeks ago by a different group offering help to people with HD. Ask Marsha... true story...

I hear you all and I respect your imput I am going to email HD Society in Canada and check this out very well before I make a decision. But if it is all free and they set this up with my daughters doctor here in town wheres the scam if I don't pay out of pocket? I would appreciate anymore advice or knowledge of this!!! This is something posted on their website:

September 1st 2010 we commenced a health study which is being observed by N.D Neil Tessler in White Rock B.C and N.D Russel Graham in Victoria in order to document and quantify the success of the NeuroWell formula. We will also be adding other physicians immediately in Nelson, Edmonton, Calgary and the Okanagan in order to more effectively conduct this study and to ultimately help more people. We do not expect this to ever be branded a “cure”. We do however expect that this will one day be proven to provide positive benefits for all persons suffering from H.D. We hope this therapy will be the first option for H.D patients and looked to as a preventative measure against the effects of the disease which will increase both quality and duration of life. We offer the therapy, the medical supervision and transportation to the appointments at no cost to the patients. We will provide this therapy for as long as the patient wishes to be on it. The only thing we ask for in return is that the patient or their family members provide a testimonial of their experience with the therapy.

Thanks everyone for looking out for me!!
Melissa

Well the problem is you have to live in BC melissa, because they want you to see their herbalist, and give testimony. They have also had this product made for them, but like their jam, how can you trust it, you know what i mean? The supplements they are using include trehalose and things that we know are good for hd, but the problem is, they are not reputable. Did you watch my link with the news clip? The huntington's society was on that news clip, and they and the better business bureau issued a caution about them, a very strong caution. But yes, email the hsc melissa, and i think that will help clear it up for you too. And im sorry, im not trying to disappoint you melissa, but ive met these people, and it's terrible what they are doing

No I want to hear the truth even if it is disappointing!! He said that I can go to my daughter's doctor here in town and be monitored that I do not have to travel there?? I'm going to check around, the BBB of Canada has no listing for them.
Thanks everyone!!
Melissa

N.D.'s are not medical doctors.

Do you really want to get medicine from someone with a criminal record melissa? It's just that free isnt always a wise choice. You really want stuff like that to be from reputable companies.

My daughter's doctor is't an ND she is an MD that mostly practices natural medicine, but she will also give a prescription if necessary. I did email the guy with the "Neurowell with my concerns asking for more info from someone besides his company and tomorrow I will email HD Society for more info!! But I do appreciate the info I will be very cautious!!
Melissa

Good, just be careful, that's all i mean. Please let us know how you make out with this

Ok I will!
Melissa

Marsha wasn't saying your daughter's doctor wasn't and MD. She was pointing out that this "company" has no scientists and that they imply that they have physicians but they don't. They only have ND's not MD's ... no scientists at all work for this place. ND's are not scientists. They are not medical doctors.

I think rather than talk you out of this... you said in your first post, this sounds amazing from what you could tell.... why is it amazing? I don't understand what you feel is amazing about it?

My grandfather trained at Hanaman In Philly as a homeopath after 8 year at Med School and before 6 years at Bones and Joints in chicago learning the new miracle x ray.He was the first doctor to have an x ray machine in his office. He had all the homeo drugs which they use based on drugs which produces the same effects will cure. Our hospital was Montreal Homeopathic until the queen mother came to visit and they changed to her name. My father trained at McGill and thought homeopathy was a crock.I think your better to lean the plants around you and use them as long as your are not too sick.

My grandfather was responsible for medical education in Ontario. He is the one who set up reg and laws to make sure drs are more than competent if they have an overseas eduction. He also wrote out naturopathy and chriopathy as illigitimate.

When my daughter who has anorexia was feeling ill she went to student health and got an aruvian doctor who believe food is bad. He told her to fast for a week. She nearly died. That why I want all my doctors to slog through medical school here, not that anyone care about that anymore.

I would never try it because I would be afraid of getting sick from it.
Laura