Thursday, September 19, 2013

Thought-FILLED Thursday: We Need YOU!

"Purpose is the reason you journey. Passion is the fire that lights your way." ~unknown



Our mission has shown the greatest success in networking through the use of Facebook:
     
     ~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". 

Unfortunately, Facebook has some serious downfalls!

I've spent countless hours, in the past 3 years, building up a community around our families through private groups and our foundation's public page (which is nearing the 7,000 likes mark). Unfortunately, little did I know since I try not to focus on the demise of the progress we have made through mounds of hard work, all of that can be instantly wiped out in the event that Facebook decides to shut everything down... and they apparently will do so without notice.

Myself and the dedicated volunteers that help to maintain our Facebook page are always extremely diligent about always treating our supporters with respect by never spamming or blasting their newsfeeds with repetitive posts or pleas for pity, yet I find myself repeatedly reported for a long-list of Facebook violations to include (but not limited to): 

  • 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!

While I have endured a nice reprieve from being reported, this happens so often that my Facebook page has been restricted more often in the last two years than it has been full-access, making it extremely difficult to manage a business and network to reach more individuals and families. 

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. 

When I am "reported" by either an unsuspecting individual that doesn't realize the consequences of trying to remove something someone else shares in their newsfeed, or a well-knowing individual who is reporting out of spite (the latter of the two is the most likely circumstance); my only option is to type an answer in to a box stating, "If you believe that this report was made in error, please let us know." only to never hear another word and be forced to quietly serve my sentence to either not message any business pages, not send friend requests, not post on other individual's walls/business walls, not post photos from my business page, etc.

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... 

I guess. 

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.

We have a YouTube channel, which is now on a front burner.

We are on Twitter, with intent to tweet more.

We have a Pinterest board, but considering inclusion of an entire Pinterest account.

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.
So, we need you!



We need you to help us share our mission and our vision in your own communities.

We need you to work with us to bring a greater level of awareness to those in your areas, especially in small towns and countries where there is limited access to medical information for families who may be faced with a diagnosis of hydranencephaly.

We need you to learn as much as you can about hydranencephaly by visiting our website, not only to educate yourself but so that you can educate others.

We need you to help us find those families who need peace of mind and reasons to "believe in the impossible" for their child... BEFORE the child is not given a chance to live the life they deserve!

We need you to work with us as you're able, in whatever capacity you are able to construe, to help us on our mission and free us from a reliance on Facebook alone.

We  need you to help us organize fundraisers and events in your community.

We need you to help us connect with medical care providers who are willing to speak up and support us in our mission to bring quality care options to these children; who are willing to go above and beyond, working with families to give their child the best chance at life that they can possibly have.

We need you to help us find people in the spotlight, like-minded organizations and charities, and people who are already making a difference somewhere that will help us stand taller and speak louder about our families and the possibilities that exist despite the prognosis.

We just need you... to do whatever it is that you can to help us, to help our families, and most importantly give each of these children a chance at the quality of life that they deserve.


We aren't asking for a cure... 

We aren't asking for a change in the inevitable (prognosis is terminal, we get that)

But we are asking for a change in the minds of those who hold our child's life in their hands, and we need your help to achieve that.



So, please find us in other platforms by clicking the links below & encourage others to do the same:


  • tweet with us on Twitter
  • check out our favorite pins at Pinterest
  • watch our slidshows and live videos of our kids in action on our YouTube channel
  • write a review of how our mission has touched you and your family at Great Nonprofits
  • follow our families at the Journey of the Bees on Blogger
  • follow our founder, (that's me, Ali Harper) at LinkedIn and help expand our network of like-minded organizations and professional individuals
  • check out awareness merchandise in our CafePress marketplace, we love recommendations for what you'd like to see!
  • subscribe to our MailChimp monthly newsletter, starting this October



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