Season 2 of PFSN Podcast: Call for guests

General Discussion Media & Awareness
#1

Dear patients,

Following the success of season one of the PFS Network podcast, and our patient stories series, we are putting the call out for season two guests. If you are willing to tell your story publicly, we encourage you to get in touch.

Along with supporting scientific research, speaking publicly is the most important thing our supporters can do.

It is important to understand that recognition of this devastating disease will not occur automatically. To generate public interest - from researchers, media and regulators - we need patients to be courageous and bold.

It is easy to dismiss thousands of anonymous online reports. It is far more difficult to dismiss dozens of real humans telling their stories publicly.

If you are interested, please send me a private message or respond here.

4 Likes
#3

Count me in (if you need foreigners). Of course, itā€™s a challenge for people with poor English.

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#4

Last call for guests - please contact me via PM if you would like to appear.

We have four guests organised so far but it would be great to have five for our next series.

Thanks,
Mitch

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#5

Bumping this thread.

Three new guests have recorded episodes for our next series but weā€™d still love more volunteers. PM me if youā€™re able to speak publicly.

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#6

Please guys. Ya itā€™s embarrassing to go on BUT nothing will be as embarrassing as living the rest of your life as a social outcast with no girlfriend, job, money or joy for life.

Being ā€œuncomfortableā€ for an hour at most to potentially save yourself decades of embarrassment and misery. Think about that long and hard. The decision to go on and speak is the logical one.

Also, Mitch does a tremendous job of interviewing. You most likely wonā€™t even feel uncomfortable.

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#7

You canā€™t hide from the world with this condition. Itā€™s not an option. You do not want to look back as you reach the end of your life and think ā€œI had PFS for most of my life because I was worried about what people would think about my legitimate medical conditionā€

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#8

Hey,
Sorry for the late reply, Iā€™d be willing to be a part of this. Btw does anyone know how to use the messaging feature cuz I seem to only be able to reply in threads?

1 Like
#9

Hey Montrealer. Click the icon on the top right. The pink circle with the letter ā€˜Tā€™ inside. From there you can clearly see the envelope icon. Click on that and you will be in your inbox. Try messaging me.

#10

I believe itā€™s because youā€™re still a new member. Iā€™ve changed your settings, it should be ok now.