https://twitter.com/Mangan150?ref_src=twsrc^google|twcamp^serp|twgr^author
that guy is a scientist and he seemss willing to use his base to tear down institutions like pharma
he’s also said before that he would never take propecia and wouldnt recommend it
can someone with a twitter profile keep reaching out to him to see if he would be willing to share or listen
https://twitter.com/AJA_Cortes
this guy as well. hes not a scientist but his base is large enough to make an impact
Good opportunity to make a twitter account and send some tweets.
id be a sock puppet account and it would come off as spam
ill do it if thats the last option we have but id prefer someone thats already active
It’s safe to say that if it is worth doing then more than one person doing it is better. Perhaps people could spend 5 minutes per day with a twitter account, reaching out to pfs affected people and sharing our videos, for example.
These small efforts are things that everyone could do, rather than silently waiting for the usual idealised solutions to appear.
I’m not directing that at you, Lakehouse, just a general comment.
I agree with that
PS- have we looked into Facebook and YouTube ads for distribution?
They are pretty cheap, and I know how to write a script that will generate attention
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.
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
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!
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 @anon74895881 who have already volunteered - a courageous effort.
Best,
Mitch
Done. Sorry, I should have said new volunteers.
Ha no worries, thought I was off the team
Never!
I hope things settle back for you soon. You’re in my prayers.
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!
Great news, hopefully we’ll hit someones interest with clout that would want to shake a few trees and get us help
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