This is how it started 3 years ago, I started to look for every new research or clinical trial on this disease. Luckily, since my friend saw that I'm very serious, he started sending me articles that other people sent him and one of them caught my attention. It was a research done at TAU University on Mannitol and Parkinson's.
I urged my friend to set up a meeting with the leading researcher, Prof. Daniel Segal, and in that meeting we learned something amazing. Prof. Segal decided to investigate how to dissolve the alpha-synuclein clumps that start to aggregate on the Substentia Nigra, in Parkinson's patient's brain, and to kill the dopamine neurons that produce dopamine. When 60-80% of the neurons are killed by the alpha synuclein, Parkinson's disease ("PD") starts to become visible and a challenge in everyday life. So, Prof. Segal and his colleagues tried several materials that they suspected will dissolve the clumps, and one of this, Mannitol did a very good job in the test tube.
Few words about Mannitol. Mannitol is an FDA approved food additive, you can buy it in the free market without subscription, it is even sold on Amazon. It has about 60 years of history, and you can find it since then in most chewing gum brands that you eat. According to the FDA if the consumption is more then 20 gr per day, a warning should be issued that it may cause diarrhea ... (guess what...very good news for many of the PD patients :))
Next step, the team at TLV University, tested Mannitol on flies that are genetically grown to have clumps of alpha-synuclein in their brain, not exactly on the substentia nigra like PD but lots of clumps all over. These flies have motoring issues when they are born. After 4 weeks of Mannitol their motoric movements were similar to regular flies and when their brain was investigates, they found out that the alpha-synuclein clumps were reduced by 70%!!!!
Next they tested Mannitol on Mice. This was done in cooperation with San Diego University, Professor Masliah. (Prof. Masliah was appointed head of Neuroscience for the NIH few months ago). The model of Parkinson's on mice is better than flies but the results were similar. It took 4 month on mice to observe a significant motoric improvement. Again, when the brain was analyzed there was 70% reduction in alpha-synuclein clumps!!!
...and now starts the sad part ... there was no interest neither in the university nor in Pharma companies to continue the test on humans. Mannitol has no patent!!! so no one can make money !!!! Who cares about PD patients if no money can be made!!!! . Prof. Segal and his colleagues had to abandon the research and published the article to continue to other research.
During the last 3 years, Prof. Segal told us that he gets email from PD patients that decided to take mannitol and they tell about significant improvements to their situation, but this is done only on emails and without any verification.
I was furious when I heard the story and together with my friend and few other friends from the hi-tech industry, we decided to find a way to bring Mannitol to the attention of PD patients. For those who decide to try Mannitol, we set up a registry where they can report on their situation such that researchers can look at the data, and make conclusions about the efficacy of Mannitol.
The registry is open to everyone who decides to try Mannitol and report back. Not like Pharma companies that would test only on a specific set of patients and would get the approval on every patient, we hope we can build a registry that can measure the impact of Mannitol (if any) on all different groups of patients. We do not sell Mannitol neither anything else and as such have no financial benefit in a successful trial. We are looking for the truth.
Some of the results now are very encouraging. We prefer not to report them in order not to be biased. Some of the users that take Mannitol in have set up a Whatsapp group where they report to each other and this can be done also in this website.
Here you can find some information about the research and the researchers and the registry. If you decided to take Mannitol, we will appreciate if you could report back to the repository for the benefit of other patients.
We launched the website about 2 months ago, and have already more than 700 patients registered growing every day.
www.clinicrowd.info
www.facebook.com/CliniCrowdParkinson
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