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  1. SaraSara

    Negative reaction to caffeine

    U know what I find so weird ? Vs and hppd patients are suffering a lot but most are not willing to donate money into research. Many keep saying; 'oh we will never find a cure' but if u keep thinking like that nothing will ever be solved . take this rare disease for example; https://www.technologyreview.com/s/603832/determined-parents-are-moving-the-needle-on-gene-therapy/ through active patient donations they're close to a cure ! or this one : https://www.hippocraticpost.com/innovation/gene-therapy-nervous-system-disorders/ David Kozin wanted to dedicate his time completely to find a cure for hppd : https://m.facebook.com/HPPDonline/posts/606793636072012 His strategy makes sense and is achievable if ppl become more active and start making donations! once I get a new job I'm willing to donate if this plan ever goes through! In the meantime we can all perhaps start donating money to Dr Goadsby's visual snow research? Rare diseases can be cured if proper research is conducted and for that we all need to donate few pounds , euros or dollars a month . Is neurogroup run by David or someone else ? I read somewhere that they were going to start research but that was a while back and I haven't seen them posting any updates about research ect . Seriously ppl we need to take action and push for research! Push for a cure ! Simply talking about our symptoms or hypothesising about a possible cure isn't gonna take us anywhere.
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