Upcoming research at The Institute for Human Genetics has been fully funded

One thing I would like to say about this: PFS and cancer are vastly different. One will literally grow malignant tumours that kill you. That’s one of the main reasons cancer is so fucking hard to cure/treat - because often by the time it’s discovered, it’s far too late.

Yes, I understand that PFS is in some cases, progressive. But after the initial crash, the disease does appear to stabilise in many.

And thank you, @loops, you are absolutely right. The equation is simple. The more money we raise, and the faster we raise it, the sooner brilliant scientists can do their jobs and provide us answers.

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It’s very unfortunate that the very nature of this disease is stigmatising (physical and sexual health issues in men), but it’s compounded by the fierce resistance we face from asymptomatic users of the drug and those who profit from it’s distribution. Such are the inordinate commercial influences working in this space.

We ran a survey recently with patients. Only 30% said they were confident asking friends and family to donate to PFS research, and of those, almost 90% said it was because they were ashamed or embarrassed, or the subject matter was too difficult to discuss.

We’re trying to change that and we’ve developed some resources to help patients fundraise more easily. We hope to launch another major fundraiser later this year, but first, we need to ensure sample collection is complete for this study.

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Honestly, and this is just my opinion, maybe people would be more willing to accept the existence of this disease if we were less “finasteride-centric”, what I mean by that is that if you tell someone that you got such serious side effects because of a supposedly safe hair-loss drug, of course that person will be skeptical; however, if you tell that same person that your body reacted badly to an anti-androgen drug/treatment and now your endocrine system is fucked up, well, that sounds more reasonable I think. After all, at the end of the day it doesn’t seems to matter whether you got this by finasteride or isotretinoin, it’s probably just our bodies that backfired due to an hormonal imbalance.

We should seriously consider coining an umbrella term for all this diseases. Something like “Androgen Abstinance Syndrome”, idk how you people decide that kind of stuff. Not to mention that a bigger disease brings more attention than several small ones.

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5000 euros is a great effort!

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Thank you
:joy: :joy:People around me (including patients) think I’m crazy. 5000 euros is an ordinary person’s one-year salary in China, and I’m also very distressed :sob: :sob:But I really screwed myself up. this is like fighting a war. This money can’t be saved.

I just hope we can make some progress quickly and prove that this road is right, so as to attract more people to participate.

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I’ve provided an update about where things are at on my member story for anyone interested.

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such an informative forum, Thanks everyone

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You’re very welcome. Would you mind making a new member post and introducing yourself to the community?

have you donated?

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@Luckfax you ask have I donated?

In what world are my private Financials any of your business? Jim

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In a world where every community member’s actions have a significant impact on other community member’s lives. Holding each other accountable to doing something so we aren’t sick till the day we die is important, and that’s all this is.

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Probably best to take it down a notch guys.

If someone is in a position to donate and can, great. If they can’t, it’s up to them.

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I’ve removed a bunch of back and forths from this thread.

There’s no need for it.

As I’ve stated above, if somebody is unable or unwilling to donate to research, that’s up to them. While I can strongly encourage everyone affected by this disease to do so, for obvious reasons, this thread is not going to become overrun with arguments about the validity of doing so.

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Hi Sugarhouse,

Really appreciate all you do for the PFS community.

Just wanted to see how things are going with the study. Has tissue collection been completed?

Cheers

Thanks @Balph. Are you subscribed to the mailing list on our website? That’s the best way to get updates.

We let patients know late last month that we’ve received all ethics approvals and are now organising patients to travel. Most appointments have been booked in beginning in Feb and we’ll be providing a longer update in our end of year address in a few weeks.

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Make sure you attend the upcoming webinar taking place next week

All signed up @Erik

The more this whole situation dawns on me, it’s clear that the studies and media campaigns are the most pivotal things to getting out of this mess. All it takes is one study to cause a snowball effect which has the ability to rapidly advance research and change our situation for the better.

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Simultaneously sad that you have found yourself here but glad that you are with us. We need all the help we can get to move the boulder up the hill.

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Any updates on what’s going on with the study?

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