Hey, so I had some thoughts as I was taking a shower at midnight after FINALLY getting our 1 year old to sleep. The shower is where my brain regains some of those cells lost during the day. Haha!
Getting the word out…
Go viral. I wonder if there is a chance, while the news outlets are busy ignoring the issue, to make something go viral! If a cat falling off a sofa can get millions of views, surely something like this could get 1000’s, if done properly!
~A simple, 2 minute cue card type video of someone who wants to summarize their experience by siletnly flipping cards
~A voice over video that briefly explains the issue of PVPS and then reads a few quotes from men/spouses who’ve suffered through this, possibly with some pictures of them w/ their families, representing what was lost
~A catchy infographic, animated or still, that gathers statistics and combines them in a way that shows the numbers of the vasectomy, PVPS and treatment methods/success rates.
Anything done of this sort would need to be top-notch with a good videographer, editor, writer, but I think it could be done! Imagine if everyone on THIS forum shared it - that’s thousands of people in the initial posting that are seeing it, thousands. And if it takes off, we all know that that happens in the online world! It would be good, if one were to take that step, to definitely have some source to point people to; this forum, a website, a foundation. Something to give credibility AND a place for people to seek resources.
My daughter was born with a rare birth defect, and through my online research into her condition, I found a website created by an British gentleman who was living with the same condition as an adult. He started a simple website that exists first to merely connect families to each other. He provided a platform that allowed parents to connect, and he began to include resources…doctor’s, hospitals, experts, news articles, research. It was very humble at first, but it has exploded. That man, who is a ship builder turned jeweler in the UK recently helped form the very first world-wide survey on the birth defect, got the backing of a respected doctor at an established teaching/research hospital, that went out to THOUSANDS of people and the results of his survey will l be presented with the most current research at the top conference in the world for this condition. He is getting noticed by top doctors in the field, he’s on first name basis with THE top doctor the guru everyone wishes was treating their child. ONE man who started a website. And it wasn’t any fancy! The guy had typos everywhere, it wasn’t polished, but he has just committed to making it better and he is making a worldwide impact on families both through the survey just because he was that person who said “We need a place to gather all of this information and make it available to parents”. It’s really, really amazing.
I don’t have the resources to do anything like this, though I’d help with writing if needed! And, I’m not up to speed on which social media platform is the
My second idea - BLOGS
My other idea was to get this out via a popular blog. I know in my circle, blog posts are at least half of the articles/outside sources material that pops up in my facebook feed. Granted, women I think are more compatible with this sort of communication, in general, but all my mom friends have favorite blogs, and often blog posts will be shared, if the reader likes it, from a blog site they’ve never actually heard of!
If anyone could reach out to a popular blog - men’s or women’s, and get their story out, and see what happens. Again, if the right person/people think it’s interesting, it could fly around the internet so quickly.
In this case also, it would need to be written more as an editorial, or in story-type style. Any viral blogpost or video I’ve seen connects with the emotions of the viewer in some way. The most common of course is humor, but any emotion can be sort of targeted and drawn out by the writer to elicit the appropriate response out of the reader. Compassion, disgust, astonishment…these all have great “viral” potential!
In both the cases of a Facebook/Instagram platform OR a blogpost on a well-known blog, I do agree with other posters that there needs to be some sort of home-base, whether that is a foundation, website, public Facebook Page or even this forum. Viewers/readers need to be able to view the content and GO somewhere. Maybe there could be a prompt for the viewer/reader to share their story, a prompt to “find out more” from other PVPS sufferers, an offer for PVPS sufferers to find resources (doctor’s, hospitals, successful treatment options)
I feel kind of bad for offering ideas and not volunteering to help, but I really can’t do much. I don’t have the tech savvy or networking/people connections to the kickstart for any of this. And also, to be honest, we’ve got 7 kids ages 11 to 1, we homeschool and I’m basically doing it as a single parent. Not completely, but close. There are too many variables in our lives right now and I’m not very reliable, as much as I want to be! BUT, I will help write, bounce ideas around, anything!
One last thought - use small outlets too, letter’s to the editor, local news stations, Reach out to the political realm - letters to the Surgeon General. Contact websites like SF Globe (online newspaper, of sorts) and ask to run a story.
Okay, that’s all for now! Sorry that got long!