Tuesday, April 28, 2015

BUZZ: National Donate Life Month

It's the end of National Donate Life Month, sponsored by the Division of Transplantation, Healthcare Systems Bureau, health Resources & Services Administration, US Department of Health & Human Services... learn more at http://www.organdonor.gov 


What if you or your child could save the lives of up to 8 people?

There is some debate as to whether or not children with hydranencephaly qualify as an organ donor - but regardless, this is your opportunity to give life through your self or other loved ones you may find yourself in a position to make this decision for.

Every year thousands of people receive the gift of life when they get a life-saving transplant such as a kidney, a liver, or intestines. Most organs for transplants come from deceased donors. Did you know that...

123,318 people are waiting for an organ
21 people will die each day waiting for one
1 organ donor can save up to 8 lives

Check out this animated video which explains the transplant waiting, list, how to become a donor, the process of organ matches, and how to sign up in your state.

You can also find more information on www.organdonor.gov

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 bettygguz.origamiowl.com 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.... 

Saturday, April 4, 2015

Creature of Habit - #HAWMC

Today's WEGO Health Activist Writer's Month Challenge asks what good habits, (health or otherwise), do I have; if I have a routine that I follow every morning or if there are any bad habits I wish I could break. #HAWMC

Unfortunately, creature of habit really describes the opposite of what I am. Not only do I get restless with habitual behavior, but it lulls me in to a place that drains my motivation and determination. I truly have no habits that come to mind, though I suppose I should say that a bad habit could be not having any positive habits?

As far as our mission with Global Hydranencephaly Foundation - we maintain a habit of believing in the impossible, even when it seems that there are no reasons left to believe. 

Friday, April 3, 2015

Good Samaritan - #HAWMC

Today's WEGO Health Activist Writer's Month Challenge asks about a time that I benefitted from the kindness of a stranger, or a time when I was the one extending a helping hand. To share how it made me feel...

I'm fortunate that my world is full of good samaritans; but, it hasn't always been that way! I made the choice to fill my life with those who believe in hope and love and doing great things. Those who do great things because they believe in people and the possibilities that exist for them, even when hope seems to be out of reach to them.

On this journey with a child who has been given a diagnosis of hydranencephaly, your support community tends to vaporize and disappear. Even the ones you count on to love you no matter what, your family, can seem to vanish from your life; you can find yourself standing alone in the dark.

When I began this journey, I felt very much so in the dark. When I got a little glimmer of hope through a support group that I had found online, the darkness instead won over the light while some members were extending less support and more criticism than I could handle. Thankfully a few great souls offered guidance, support, and unconditional love throughout the difficult early months...

We are  no longer as close as during those early days, but their tiny devotion to my family means so much to me - after nearly 7 years. They did not show kindness in some grand gesture for attention or recognition, or even in hopes of return. They did it solely out of love. That love helped to reach over 450 family members as it eventually began a blog which grew in to my own support group; which in turn grew in to the nonprofit that we are today... 

Find a Rainbow

National Find a Rainbow Day

If there is anything more important to the lives of families facing a devastating diagnosis for a child in their life, it is seeking out those rainbow moments...

those moments when it's calm after the storm and you remember everything you are fighting for, the beautiful and blessed moments when everything just feels right in your world again.

Thursday, April 2, 2015

WEGO Health Activist Writer's Month Challenge

I haven't made the big announcement here on the blog, but Global Hydranencephaly Foundation's Family-to-Family Resource Network won the honor of Best in Show: Community or Forum in this year's WEGO Health Activist Awards. Amazing to have been nominated two years in a row in a few categories, even more of an amazing achievement to have won in this category for 2015!

With that honor came a greater connection to the community of support at WEGO Health (check them out HERE).

It just so happens that one of my New Year's resolutions for 2015 was to get back to where my heart and soul is... in writing. Life got in the way, then technology took me down for a while - but now I'm ready and motivated with a little help from our friends at WEGO and their latest efforts to bring greater awareness to the health activist community by hosting...

The Health Activist Writer's Month Challenge all of April #HAWMC

They've given me the prompts (GREAT ones, at that!!) and I'm super excited to get this going, even if I am a day late.

So, I'm kicking off the month's challenge a day late with two posts:

Day one was Wordless Wednesday (what a coincidence, since it's ALWAYS Wordless Wednesday at our Facebook page!! I'll direct you there to see all of the excitement that comes with that day...)

Day two is:

Key to Happiness: What do you think is the key to happiness? Is it being able to overcome a hard time? Laughter? Maintaining a positive attitude?

This is a loaded prompt for me.

Happiness hasn't been my friend for a long while. Not because I did not try to seek it, nor is it because I did not want it! It's mostly because I simply did not recognize it as such while I had it and other times was shamed in to not acknowledging it when I did.

Sounds a little hard to follow, I know.

Throw in to the mix the fact that happiness is really hard to live in when so much of my world is torn apart.

But, I'm going to attempt to address this #HAWMC on happiness anyways.

The key to happiness is acknowledgement. Recognizing that you are happy in the small  moments, even when there are bigger, not so happy moments that are out of your control. In the midst of that, you have to recognize the beautiful, perfectly placed bits of time that do make you happy - even if just for one second.

That wraps up my attempt at today's writer's challenge... more to come!

CONTEST announcement

Friday, April 17th is National Haiku Poetry Day... and I thought that since it had been a long while since we had a contest, this would be a great opportunity to host one.

Soo - we want to see your creativity. The more bee-inspired, the better!

Haiku poetry is a form of Japanese poetry that is generally non-rhyming and normally consists of 3 lines with a syllable pattern of 5-7-5. Haiku poems are usually inspired by an element of nature, a season, a moment of "bee-auty", or a special experience or event. Sensory language is used ot capture a feeling or image. **English haiku does not always follow the strict syllable count that is found in Japanese haiku. The typical would be 10-14 syllables.

The Haiku Foundation has a website you can check out for more inspiration.

Image result for $20 starbucksOur contest runs until midnight on April 16th. We will announce our favorites on National Haiku Poetry Day on the 17th and select one lucky creative artist to win a $20 Starbucks gift card.

only a bit of fine print:

**GHF Board of Directors members are not eligible to win**

Wednesday, April 1, 2015

Buzz: Remember Kemmer

April Fools on Your Family Dinner

From our friends at Macaroni Kid - EATS! just a little bit of fun stuff for your family this holiday! 

April Fool's Day Fun

March 17, 2015
Dessert for Dinner and Dinner for Dessert!
By: Heather Wirtz
top image
Heather Wirtz
Sundaes for dinner and grilled cheese with fries for dessert?! The perfect April Fool's Day trick, your kiddos won't believe their eyes or their taste buds!

What you will need to make Sundaes for Dinner:

Mashed potatoes 
BBQ pulled pork (pulled chicken, chopped brisket or pot roast work well too)
Cole slaw 
Plantain chips
Small red peppers or grape tomatoes
Sundae glasses
Piping bag with large star tip
  1. Fill the piping bag with mashed potatoes
  2. Fill one third of the parfait glasses with mashed potatoes
  3. Add a layer of pulled pork
  4. Add a layer of cole slaw
  5. Pipe more mashed potatoes on top in a circular motion, as if you were piping whipped cream on a sundae
  6. Add the small red pepper as a “cherry” and the plantain chip as a “banana”
  7. Serve hot and trick your kiddos!
"Grilled Cheese and Fries" for Dessert!

For the fries you will need:

Sugar cookie dough (store bought or homemade)
All purpose flour

To make the fries:
  1. Preheat oven according to cookie dough recipe.
  2. Lightly flour work surface and roll out cookie dough.  
  3. Cut dough into a long strip 2-3 inches wide. Slice the strip into pieces that resemble thin french fries.  
  4. Gently lift off of work surface with a spatula and place onto a baking sheet. 
  5. Bake according to package, but check often - the cookies may cook quicker because they are cut into small pieces.
  6. Remove cookies from baking sheet and set aside to cool.
  7. Once cool, place fries in fry holder (directions below) and serve with a dipping sauce!
Dipping sauce - anything red that looks like ketchup! We used strawberry jam with a little chocolate sauce mixed in.

To make a holder for the fries:

Take a letter envelope and seal it. Cut the envelope in half and now you have a perfect holder for your fries!

For the grilled cheese you will need:

Pound cake
Yellow/orange "cheese" colored frosting
Piping bag
Clean paint brush

To make the grilled cheese:
  1. Slice the pound cake to resemble 2 slices of sandwich bread.
  2. Using a paint brush, brush cinnamon onto the outside of each slice of pound cake.  This will make it appear "grilled or toasted".
  3. Pipe or spread icing on the inside of one slice of cake.  Place the second slice of cake on top as you would a grilled cheese.
  4. Slice in half and serve with fries!