We understand completely, the frustration at having to wait for science to take its course before treatments and cures become available.
However, the long term safety and efficacy has not yet been proven for either Cabaletta (trehalose) or Niagen (nicotinamide riboside) so we CANNOT recommend people with ataxia take these. But we are aware of the research that is currently going on and the researchers have been in touch with us, including some of them attending our last International Scientific Research Conference in 2015.
Researchers are testing the effect of various supplements in a number of ataxias and there are a number of examples in Friedreich’s ataxia (eg: Vitamin B12, Vitamin B3, CoQ10). In this case, as mentioned Bioblast is testing the effect of trehalose in SCA3 with some initial encouraging results but we do still need to wait to get results on SAFETY and efficacy. It is VERY DANGEROUS to start taking any sort of medication before the safety is proven - even supplements!
You can find a little more information on Ataxia UK's website, where we have a blog on the trehalose research ataxia.org.uk/Blogs/latest-....
Sorry to be a bit of a damp squib - but we have to tell it how it is.
Sue
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SueMillman
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Are you kidding me???? Trehalose is sugar and has been a dietary supplement for decades and can be bought on Amazon and has toxicity studies up the yin-yang in humans. Are you really going to stand there and tell people not to eat trehalose because it might be dangerous???? That is insane and I smell a BioBlast rat trying to protect their $300,000 IV injection. I hope people on this site are smart enough to see through your blatant protection of big pharma. You and your types make me furious. We're talking about an illness that kills and has no treatment and here we have a bloody sugar that MIGHT help and you want to tell people "Oh no it might be dangerous DONT DO iT" Can you see how insane that is??? Tell people it's not proven. Tell people its a big if and don't get your hopes up, but for God's sake lady don't tell people not to try.
Do you even know what trehalose is???? Did you know that BioBlast dropped the Cabaletta moniker??? Did you listen in on their webcast last week??? I can't say this enough. Trehalose is a freakin' sugar substitute that has even got use for diabetics, and you want to scare people off????? What is this world coming to??????
How many of the research articles I posted have you read? Do you have any understanding of the science behind trehalose? Is there ANY research ANYWHERE that has EVER shown one iota of danger from this sugar substitute? Do you have any idea how great the risk reward ratio is on this stupid little sugar substitute? Why . . . just tell me why? Why are you really opposed to people eating trehalose? Read the flippin' research and come to your own conclusion and stop listening to the "experts"!!!
a) this thread is over a year old b) try researching my posts and you will see that I am 100% symptom free over a year later c) my aunt remains stable with no progression d) my father was stable until he entered a nursing home and then he took a turn for the worse . . . the nursing home refused to give him trehalose and niagen without a doctor's order.
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Didn't your mother ever teach you not to say anything if you don't have something nice to say.
I left another website for similar reasons and before I left I got an email from an admin who admitted to me that BioBlast was a donor that supported the website. Does BioBlast support this website financially?
As for Niagen, fine it's wholly unproven to have any bearing on ataxia. (Not true but anyways) Fine. But, again, for God's sake . . . . dangerous?????? There are two human clinical trials that have been completed where people ate 4 times the label amount with no side effects, people as old as 80. It's a vitamin. You want to tell people not to take more than the label, fine. But don't be a fool and try and call it "DANGEROUS". It's FDA approved you can buy it online. Tens of thousands of people take it daily as a "health enhancer". It's not freakin' "DANGEROUS".
What part of ataxia is a fatal illness do you not understand? What part of there is no other treatment available AT ALL do you not understand? I show REAL SCIENCE IN HUMAN TRIALS that MIGHT, MAYBE, SORTA be helpful and you want to say don't try eating sugar and taking a vitamin pill because it might be dangerous????? AHHHHHHH!
The blog you linked to has two paragraphs on BioBlast from a conference over 2 years ago. The first discusses an FA drug they tested and said they planned on bringing to trial in 18 months. That was 2015. They dropped research on that drug. You have no mention on the blog of the flurry of information they posted at the beginning of this year nor the fact that trehalose is first being explored as treatment of OPMD, oculopharyngeal muscular dystrophy and the SCA3 application would be behind that and they are estimating OPMD commercial availability of 4 years meaning patients are looking at 5 years or more for other SCAs for a sugar that was shown to have potential back in 2004 but because it is a sugar and seemingly impossible to ingest no one has even tried. Does anyone else want to comment on this lunacy. Am I the only person here angry? If so just say so and I'll shut up.
I have tried trialose in its pure form, but you need so much. When you have all sorts of form of ataxia we have to try what we can and good quality supplements are not dangerous for us. Medication always has sideeffects. I have a bad form of ataxia and i have turned it around and its all common sense. We have to give our bodies what they need to support healing.
I say it again and as we have no margins we have to stop eating gluten, sugar, fructose, cowproducts and processed food. And read about the doctor who has ataxia "walking with ataxia"
There is hope for us and I am not saying all is but medicineindustry is a business.
I totally agree concur with you 2sunny ! You should get a medal for all of the research you have done and indeed, you are the only one who has presented evidence facts based on experience ; enabling us to make an informed decision about what we ingest to try and salvage some quality of life.
You have helped and offered a glimmer of hope, when I hope is scant.
Reading about "medical" people getting together on a jolly to Italy – to Judge and discuss how best to peddle expensive drugs to the NHS, while discrediting safer, natural alternatives - based on lack of evidence from expensive trials does seem patronising and just as ill informed.
Walk in our shoes for just one day and then tell us you understand.
Please keep up the good work and don't be discouraged.
This site is for swapping information on anything that may help and letting us have the autonomy to make a decision ourselves.
When you are slowly dying and desperate because you and your family are getting significantly worse you will try anything that MIGHT help to slow things down. It is good to know so you decide for yourself after reading the research that is being done today ,
And Joe went to the effort of collating all of that information for us, for our benefit, I think us all time and energy and giving us hope, when Scott Hope is scant
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