Sunday, April 26, 2015

only FIVE more days!

Only five more days to get in on two great opportunities - both wrapping up at midnight on April 30th.

First is our fundraiser with Origami Owl. Join the Facebook event if you have any questions - otherwise it's a pretty straightforward process. Visit our Independent Designers website and use party code 66301 when you check-out to ensure your order goes towards our fundraiser! That web address is and our designer is Betty Guzman.

Next opportunity wrapping up at midnight on April 30th is our early registration incentive for our 2nd Annual "Let's Roll!" Hydranencephaly Awareness Walk/Run event happening all across the globe! With registration by the 30th, you will not only receive your free event t-shirt - but also 2 free awareness bracelets to wear and share! Only $25 gets you signed up and ready to start collecting sponsorships for the event... join our Facebook event page to ask any questions, or just head on over to our website to register!

Last year's event was SO much fun and we want this year's to be even greater! Check out the event slideshow from 2014 here:

Friday, April 24, 2015

FACT-buzz Friday: World Meningitis Day

Today is World Meningitis Day - many do not realize that meningitis actually has the potential to cause hydranencephaly in infants and children. Please learn all that you can. We will be sharing #FactBUZZ posts on the Facebook page throughout the day, so head on over and check it out...

In the meantime, we want to share in recognizing the beauty that exists in the lives of those touched by this infection...

Thanks to Anne Geddes, from the Confederation of Meningitis Organizations, Telethon Kids Institute for Child health research:

"After conducting photo shoots in Australia, London and Toronto, Anne Geddes has compiled images of meningococcal survivors into a beautiful eBook entitled Protecting our Tomorrows: Portraits of Meningococcal Disease.

This stunning Anne Geddes image collection includes participants from around the world and is available as a free eBook from today, World Meningitis Day, 24 April 2014.

This unique partnership between Anne Geddes, the Confederation of Meningitis Organisations (CoMO) and Novartis, is a global initiative to raise awareness among parents of the threat of meningococcal disease and the importance of its prevention.

"As a photographer and mother, it was incredibly moving to meet these young people and see firsthand the impact that meningococcal disease has had on their lives," said Anne Geddes.

"I feel privileged to be joining these survivors and their families, not just to raise awareness, but to highlight their powerful stories of resilience and also honour those who have tragically lost their lives to the disease".

The Confederation of Meningitis Organisations (CoMO) is very honoured to have partnered with Anne Geddes on this project as the Global Partner.

"We are proud to be a part of the Protecting Our Tomorrows: Portraits of Meningococcal Disease project that continues to educate communities across the globe through inspiring photographs and powerful stories," said CoMO President Bruce Langoulant.

"CoMO represents families around the world who have been directly affected by meningitis caused by meningococcal disease and with this series and eBook, we hope families know about meningococcal disease, recognise the symptoms, act quickly, and check with your doctor if your chlid's vaccinations are up to date."

You can download your copy of the e-book by going HERE

Monday, April 6, 2015

My Hero - #HAWMC

I'm determined to participate in every day of the WEGO Health Activist Writer's Month Challenge - which is a huge challenge since I'm in between spring break vacations and have a state certification test in the morning (which brought me back home for a few hours today to repack and regroup!).

Today's theme is "Your Hero" 

easiest topic ever...

hands down, my hero

Brayden Alexander
(June 30, 2008 - November 15, 2012)

read his journey HERE

Sunday, April 5, 2015

Breaking News - #HAWMC

Today's WEGO Health Activist Writer's Month Challenge begs me to offer up my proudest accomplishments in the last 5 years. While I have several dozen personal accomplishments, Global Hydranencephaly Foundation has some even more amazing ones to share! How appropriate that we began as a little spark of an idea about 5 years ago...

in 2010. 

While watching Bee Movie, a quote struck me:

Image result for when did bee movie come out"According to all known laws of aviation, there is no way that a bee should be able to fly. Its wings are too small to get its fat little body off the ground. The bee, of course, flies anyways. Because bees don't care what humans think is impossible."
I remember thinking that my "B" (Brayden) was the epitome of this quote.

In 2011, Brayden Alexander Global Foundation for Hydranencephaly was incorporated as a nonprofit entity. A huge endeavor achieved by a few determined bee-keepers on a mission to bring greater awareness to the condition and the children living to defy the long list of medically subjected odds set against them.

That was in June, the 14th to be exact.

We adopted our mission, vision, our first logo (or something of the sort that included a tree with heart leaves, butterflies and a bee), started building our website and built the strength of our family-to-family resource network.

That insanely long name became our incorporated name while we worked to gain recognition with our business name - Global Hydranencephaly Foundation.

That logo-type-thing eventually evolved in to who we now know as Bennett Buzz-bee (who was named by one of our bee-keepers in a contest - Bennett - blessed little one) with the globe. 

Most fail to recognize the specific design of Bennett with his muscle-laden arms (to resemble strength of our children and their families) and the crooked smile (which several of our children so proudly shine).

"Believe in the Impossible!" - always our mantra.

But with inspiration from the Mary Kay Ash quote that I found Bee Movie had been inspired by

and the thought that Brayden's light was so big that it needed a way to continue shining beyond his years here on earth has grown in to a support network representing over 450 children, both earthly and angels, who have been given a diagnosis of hydranencephaly - their families and a support network across the web of well over 10,000.

But that is all the boring business stuff...

the greatest achievement is that Global Hydranencephaly Foundation has successfully built a family of families and brought to light so many reasons to "Believe in the Impossible!" through sharing of the lives of their children... thanks goes to all of those who have contributed. And may we share in this success for many more years to come....