~This social media site just so happens to be where I first "met" the inspiration for me to start blogging (a baby girl living with a s similar condition called anencephaly), which led me to finding other families who were on the same journey as I was with Brayden.
~This is where I established my online support group for families touched by a diagnosis of hydranencephaly, which grew in to something far more than just a support group... but became an extended family.
~This is where our foundation has reached more individuals who maybe would have never otherwise heard of hydranencephaly, let alone the possibilities that exist for a child who is "born without a brain".
- posting spam
- violation of someone else's rights or the law
- harassment or bullying
- intellectual property infringement
- violation of page terms
- inappropriate language
- misrepresentation of another individual
- and even for threats!
The looming threat for continuing the punishable behavior, even though I'm not guilty of said punishable behavior, is that I will sign in one day and discover that my page has been "unpublished" with one or more of the above reasons cited.
SO, that's it... a box that says what my profile is being restricted for with a blank for an appeal... but no further opportunity to plead my case or explain a word... not even the option to ask that Facebook review the reports for accuracy or point out the incessant reporting which can likely be directed at a handful of individuals.
In the event that I log on and the foundation's page has been "unpublished", you apparently click an "appeal" button... and you wait, without a fair opportunity to appeal.
That's it! You wait!
You wait for someone who is likely completely disconnected from your mission, has no clue of the sincere intent behind your business or organization, or simply wants to cause your mission grief and build huge obstacles....
to decide whether you should be given the opportunity to explain the circumstances from your perspective in a plea bargain to save your brand on Facebook...
In any event, business pages have been, more often than not, simply found themselves being notified that they have been permanently removed without an utter of rhyme or reason.
So, in the amount of time that it takes one individual to click "report as spam" or "report this page for ______"... all of the hard work we have accomplished can be wiped out of Facebook's existence... and our audience will no longer have the leisure of keeping up with our mission and we will no longer have the leisure of using one social media site to raise awareness of hydranencephaly.
SO, I have been working intently on expanding our reach beyond our Facebook page. The options are endless, really, but finding the easiest to use while remaining efficient and effective while proving to be user-friendly for myself has proven to be difficult.
One step we have made is to start utilizing the MailChimp newsletter service to delivery MONTHLY newsletters directly to your email inbox. Email rarely fails, but it's not a great means for keeping in touch with our supporters on a regular basis and building the lines of communication that our families crave and the communities we are seeking to reach need.
Essentially, we are exploring every option presented... and need you to help us!
We need to not be held at the mercy of Facebook and it's decision makers who so readily delete pages and groups without a fair hearing. I don't find any level of comfort there, nor do I find any level of assured sustainability, by basing our foundation's major platform on Facebook alone... a platform as shaky and unpredictable as a boulder balancing on a marble in a windstorm. I, myself, do not want the success of our foundation being held in any other individual's hands other than my own... it's too much a large piece of my heart and far too valuable to the families we represent and connect with there.