RARE DISEASE DAY 2021: Announcing PFSNetwork.org, a watershed moment for PFS awareness. PLEASE READ AND SHARE

I think that’s a good idea but at the moment focusing on what we can get done as a community, using our own voices and the reach we have as individuals is more what we need to do. Of course advertising campaigns would be nice, but I think we’re not there yet.

I think that Facebook etc ads may be cheap, but at the same time we could easily burn through thousands of pounds/dollars/euros very quickly to see a very small improvement in our recognition.

That’s just my opinion.

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it is very easy to burn through cash with facebook ads

however, i think when the time is right, RETARGETTING ads could be very beneficial as they go after warmer audience members

just something to consider

right now i get that we want to be as organic as possible

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Is this something you have experience of personally? Feel free to pm me if you have some insights to share, I’d be interested to hear them.

PM’d you

PS can you provide me insights in my latest post asking about BB536 and possible interactions with AR receptor?

i dont want to take it if its potentially dangerous would appreciate your input

Sadly, I am not someone who can offer any insight there. Will reply to your pm later, thanks.

Guys, if you haven’t watched, liked, subscribed, (re)tweeted, commented or shared yet, please do so! The visibility on social media is highly dependent on interactions, hence we need to push these numbers up.

Thank you!

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A quick update on the YouTube video series - they are performing quite well, given the size of our community.

Here’s the breakdown since we launched 10 days ago.

Patient stories complilation

This video has 956 views, 58 likes and the best part, only 1 dislike.

PFS explainer video

This video has 620 views, 42 likes and 7 dislikes.

I think given the size of our community and the fact we’re launching a new platform, this is an achievement we can all be pretty proud of. I would still encourage you all to share, like and comment on the videos, and encourage your fellow patients to do the same.

My key observation is that human stories work best. It’s no surprise to me that the patient stories compilation has more views, likes and less dislikes than the explainer. It’s easy to dismiss the issue in the abstract, not so much when it’s a real human.

With that in mind, I’ll bang the drum again for patients to speak publicly on our upcoming video podcast series. We will never solve this issue if we remain anonymous.

Thank you to @Toughluck24 @pokertje @teddy25 and @FinDestroyedMe who have already volunteered - a courageous effort.

Best,
Mitch

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@Sugarhouse thanks for the update. Can you add me to the volunteer list?

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Done. Sorry, I should have said new volunteers.

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Ha no worries, thought I was off the team

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Never!

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I hope things settle back for you soon. You’re in my prayers.

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We have now reached over a 1000 views on our patient story compilation, which is fantastic!

I cannot say it often enough: interactions are invaluable for visibility on social media. So, if you haven’t yet, please watch, like, share, subscribe and comment on our videos!

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Great news, hopefully we’ll hit someones interest with clout that would want to shake a few trees and get us help

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Hi everyone,

I’m bumping this thread, particularly in relation to the PFS video podcast that is only weeks away. We have 3 courageous patients ready to participate, along with some other interesting guests, but I’d love if we could line up at least 5 patients to begin.

You are not alone - I have also struggled with the stigma and shame of this condition. For almost 7 years, I hid PFS from everyone except my family, and pretended I had a somewhat normal life. It was hell and incredibly exhausting, and I was always so worried what people would think, or whether they would believe me given my experience with clinicians. Over the last 6 months, I’ve told many people including my friends, work colleagues and boss, along with speaking publicly in the video for Rare Disease Day. I have been so pleased, and surprised, with the support I’ve received.

It’s easy to forget that these people are not clinicians, and for them, seeing me in despair was enough to offer their unconditional support. Some have even promised donations for our planned study in summer, which has been incredibly heartening. I think patients would be surprised at the support many will offer us publicly, especially when they understand the devastating human impact of this disease, and that it is not our fault.

Another overlooked aspect of speaking publicly is the effect it has on research. It is easy to dismiss our condition when it is presented in the abstract, but when real humans speak about its impact it cannot be denied. It’s also a necessary building block in getting more researchers involved. Many patients often speak about the need for more research, and this is a simple step you can take to help make that happen. It would be remiss to assume the problem itself is always appropriately appreciated, even by interested scientists. Patients suffering in silence is a big challenge to understanding of the problem. We don’t just need more people having a guess at what’s happening to people, and that includes academics. These projects can really help bolster understanding.

With that said, if you are interested in speaking to me on our new video podcast series, please reach out via PM.

We also have many exciting projects we’re planning for in 2021, but we need help. So if you are enthusiastic and would like to help in general, please reach out via PM also.

Best,
Mitch

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@Sugarhouse, are you familiar with the YouTube channel, https://www.youtube.com/c/ChubbyemuGames/videos?

He has almost a million views per video where he discusses unconventional medical outcomes of different substances. I wonder if he would be worth contacting to produce a video for us…something along the lines of, “This man took Finasteride, and this is what happened to his body”.

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I have been suffering for 4.5 years now and to be honest I’m kindda done waiting, things are only getting worse and worse for me.
I decided to be part of the podcast for the exact reason that @Sugarhouse has said.
No one will donate/investigate or have empathy for a bunch of anonymous guys on a forum, this is exactly why we need to put a face to it.
Now I agreed on the condition that my facebook and instagram will not be linked to the podcast. It may sound weird but I’m ashamed of people knowing I have a condition… which sounds weird if you think about it.

Still I decided to be a bigger help to the foundation than just come up with new theories. I ask you guys to pls do the same, I know there are a lot of us and we all want to get better. Now the foundation has a plan to do that, we just need to help them get there. Most of us will not recover on our own and we need professional studies to back us up or we will never come out of this mess.
Trust me… I have lost a lot these couple a weeks due to this shit, and all I want is just to get better. Do you guys really want to waste the next 4+ years on shit that doesn’t work like I did?

I will also donate around 1000 euro to get things going, now I can live without that 1000 euros, but I cannot go through life with this shit holding me back. I’m not asking you to donate as much as me, but just imagine if everyone on this forum donated 100 euros. Do you guys really want to be in this shit forever?

My girlfriend broke up with me 2 weeks ago after a relationship of 2 years, it broke me. Especially because the reason is that I just can’t give her what a healthy man can, and I don’t blame her for it. All I can do now is focus on the future, but there won’t be a future for any of us if we just keep doing what we have done until now. Pls guys… join me in the podcast, help yourself to put an end to this miserable state we are in.

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Well said @pokertje come on guys WE all need to step up this IS the year things are happening dont let it us fall back into obscurity

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Thank you @pokertje! I would encourage anyone looking to take action to do two really simple things:

  1. Think about whether you can speak on the podcast publicly, and if you can, reach out
  2. Read our thread about possible research in 2021 here: PFS Research in 2021: PFSNetwork fundraising for research projects with the PFSFoundation in Summer and start thinking about what you, or your family and friends, could contribute.

Just to clarify on poker’s comments above, our possible research later this year will be a separate fundraising project. That means if you donate, your funds will contribute directly to the research project, and nothing else.

With that said, we’re not asking for immediate donations to the Foundation. Rather, we are asking all patients to think about what they could donate, and when the time comes - likely around Summer - we’ll present all the details to the community and start fundraising.

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