Important initiative for Movember

Recently, I had a productive and encouraging one hour long meeting with two senior members from the Movember board of directors. I met with the head of programs and an advisor who is a clinical psychologist well known for male health advocacy.

For context, Movember is the largest men’s health organisation in the world. One of their key focus areas is preventing male suicides, which obviously is relevant in respect to PFS. Therefore, I reached out to seek recognition as well as funding for PFS.

The clinical psychologist has two clients with PFS, and was familiar with the seriousness of the disease and expressed his sympathy. The meeting started with me explaining my personal story, and detailing the severity of my symptoms which have persisted for a year now. I made a compelling case for them to support us, as we badly need recognition and a sign that we will receive external support to expedite our efforts to get out of this situation.

They initially took the stance that they focus primarily on prevention and early detection rather than therapeutics. However, I made a strong case that supporting research will provide hope and therefore prevent suicides, which is directly in line with their stated objective as an organisation.

The meeting ended with them suggesting ways they could help, and they said they would consider funding our research, supporting our awareness efforts, and connecting us with other individuals and organisations who could be of assistance. They are going to review everything I have sent them about our condition and revert back to us in early December.

The significance of Movember recognising PFS and supporting our research is quite obvious.
I want to make our appeal as compelling and hard to deny as possible. I’m therefore requesting a short 2 minute video clip from all willing patients that I can send to the two gentlemen from Movember.

The short clip should include the following:

*Introduce yourself: give your name, age, where you live and briefly provide some background regarding how long you took the drug and that you thought it was perfectly safe

*Describe how PFS has impacted your life. Be as detailed as possible regarding the symptoms you suffer from, the fact that no existing substance, medication, treatment or protocol has fundamentally altered the condition. Talk about how PFS has impacted you professionally, romantically, and socially. If you have had suicidal thoughts please make this clear as suicide prevention is one of Movember’s main areas of focus

*Finally, finish by stating what Movember supporting PFS , and more specifically PFS research, will mean for you. Will it give you hope? Will it give you strength to fight suicidal thoughts? Will it potentially mean a path to targeted therapeutics? Will it help legitimise an issue which is unfairly stigmatised and ignored? This part is extremely important.

I will NOT share this video with anyone other than the directors from Movember.

Sharing such an appeal video from as many patients as possible will make it much more likely for Movember to give us the support we badly deserve and need.

If you are not a native English speaker you can still share your video with me and I can send them a brief written note explaining your story.

I look forward to hearing from as many of you as possible. It’s time to act intelligently as a serious rare disease community, and take meaningful steps to remove these shackles which enslave our souls.

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Ill do 1 over the next few weeks. come on guys let’s not waste yet another opportunity

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Great work Erik, I’ll do it!

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Thank you!

Thanks Laz!

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We want to give ourselves the best possible chance to get outside support. It’s time for us to get serious Your voice can make a difference. We can’t complain about being abandoned if we’re unwilling to make our case for support.

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Exactly Erik, if no one speaks out then why would anyone think or believe that there’s a problem

19000 reported cases on the foundation and we always struggle to get people to come forward. We’re at a tipping point we need to keep the momentum. Great work by the way.

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算我一个

Great!

Erik, how can we send you the video?

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Let me give you my email and whats app number by DM

What is (more or less) your deadline for receiving/sending in these clips?

Ideally I would like to get the clips this weekend or by early next week

How many videos were you hoping to give them, and how many are you realistically expecting to be recorded and sent to you in that timeframe?

I will send you a video.

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That’s the reason why propecia and proscar and all the generic (nearly every pharma company sells) are still on the market. For me it looks like18.900 from 19.000 pfs sufferers are only interested in self medication and frauds promising 1200 % recoveries with their online products (In my opinion friendly sponsored by pharma public relations / sometimes selling finasteride and saw palmetto on the same webside!!!). With a powerfull victims community, finasteride should has been kicked off the market a decade before and me and so many others wouldn’t have touched the ugly poison.

I have sent a video too…

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i will to do video and send u. Guys, send video for Erik, please.

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Big thank you to Erik for setting this up. I’ve sent Erik my video and hope all of you will too. There’s no excuse for not participating in this. The video isn’t even going to be on YouTube or any public platform so no fear of being judged.

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Fantastic!

I’m aiming for at least 20 videos. So far, I have commitments from 10 people and have received 4 videos.

Would you be willing to participate?