Tuesday, February 24, 2015

Happy Ruckusmaker Day!

About to be celebrated all over the world for the first time, is annual Ruckusmaker Day.

From Seth Godin's, who I absolutely adore to follow for marketing and leadership guidance: 

"Tomorrow would have been Steve Jobs' 60th birthday. Steve's contribution wasn't invention. Technology breakthroughs didn't came out of his workbench the way they did from Land or Tesla. Instead, his contribution was to have a point of view. To see something and say 'yes' or 'no'. To not only have a point of view, but to change it when the times demanded. 

Most of all, to express that point of view, to act on it, to live with it.

There's a lot to admire about the common-sense advice, "If you don't have anything worth saying, don't say anything."

On the other hand, one reason we often find ourselves with nothing much to say is that we've already decided that it's safer and easier to say nothing.

If you've fallen into that trap, then committing to having a point of view and scheduling a time and place to say something is almost certainly going to improve your thinking, your attitude and your trajectory.

A daily blog is one way to achieve this. Not spouting an opinion or retweeting the click of the day. Instead, outlining what you believe and explaining why.

Commit to articulating your point of view on one relevant issue, one news story, one personnel issue. Every day. Online or off, doesn't matter. Share your taste and your perspective with someone who needs to hear it.

Speak up. Not just tomorrow, but every day.

A worthwhile habit."
What exactly does this have to do with OUR mission? The answer is - EVERYTHING!

Please continue to learn all that you can about hydranencephaly and the families that we represent through our efforts. These children continue to be given a diagnosis that is deemed "incompatible with life" which we know to be more often UNTRUE than true! If you're on any stage of the journey with a child given this diagnosis - or with a similarly presenting diagnosis (which I encourage you to contact me to chat more about) - please share that journey. The misconceptions are beginning to fade away and the hope is taking a stronghold in the medical community for these children.

In fact, be BOLD:

Seth Godin: Keep Making a Ruckus from 99U on Vimeo.

BUZZ: Happy Heavenly Bee-Day

Monday, February 23, 2015

Meet the Bees

Need some help?

Head on over to our Facebook page and check out our photo albums... in case you still believe that hydranencephaly is a condition that should be deemed "incompatible with life" - I'm sure you'll start to believe otherwise!

Or find us on Instagram!

If you would like to see your bee featured on "Meet the Bees" or in a "Bee-ography" some Monday at Global Hydranencephaly Foundation - email me at President@HydranencephalyFoundation.org for more information!

Friday, February 20, 2015

Fact Buzz Friday

Statistics will tell you that hydranencephaly has an occurrence rate of 1 in 10,000 births worldwide, or 1 in 250,000 births in the United States alone (Kurtz, 1999). 

What statistics will not tell you about are the countless babies who were given up on far too soon, with encouragement from the medical professionals. Statistics also will not tell you about the countless others that are unknown due to misdiagnosis, lack of diagnosis, or just simple oversight without a cause of death to be determined.

Statistics are important to the medical community. 

They're not important to our community, except that without them - we cannot gain ground in the world of awareness in successfully changing the medically subjected misconceptions that surround this diagnosis; nor can we ensure that every child given this diagnosis is given the opportunity to live the quality of life they deserve, without the stigma attached that their condition is "incompatible with life." 

Incompatible with Life? Not often. 

The following video is not about hydranencephaly, but it does give you a raw glimpse in to the lives that our families live in the beginning after diagnosis: being told to terminate, expecting a baby to die and not being able to celebrate their life, planning a funeral instead of a baby shower, counting final breaths, etc. 

This fact buzz Friday message is simply this:

Please do not let a diagnosis dictate the quality of life an individual will have. Do not let a diagnosis guide the level of medical care that an individual will receive. Do not let a diagnosis fool you in to believing that there are any amount of impossibilities that travel along with it. Do remember that each life is a unique one, not to be compared to all others. Do remember that each little life, regardless of how little in quantity, will be great in quality. Do remember to "Believe in the Impossible!" 

Tuesday, February 17, 2015

Raise & Join Hands for Rare

Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in a record-breaking 84 countries around the world in 2014. We hope many more will join in 2015. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

Our objective is for the World Health Organization to recognise the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide.

On rarediseaseday.org you can find information about the thousands of events happening around the world to build awareness for people living with a rare disease and their families.

This year's theme is "Raise & Join Hands for Rare Disease Day" to symbolize your solidarity in support of those 1 in 10 individuals living with rare disease. Whether you are with your family at home, 10 people in an office, 100 people at a conference or 1000 people at a public gathering: RAISE AND JOIN HANDS to show your solidarity with rare disease patients around the world! Help us show we are all mobilised for people living with rare diseases and driven by the same objectives.

Please share your photos on our FB page and upload here on the Rare website. (Remember to specify the location and the country where the photo was taken.)

BUZZ: Happy Heavenly Bee-Day!

Monday, February 16, 2015

Meet the Bees Monday

Meet *drum roll please*......

If you'd like to have your child featured in a weekly edition of "Meet the Bees" Monday around the web, email President@HydranencephalyFoundation.org for further information!

Sunday, February 8, 2015

We're Buzzing on Back to Blogger....

Ok WordPress - we came, we saw, we tried... but you gave us a headache. So, we are back to Blogger for good!

Give us a little time to "catch up" and we will be back to regular posts here very shortly! We have ALOT to share here...

Always seeking volunteers to help author here on the blog - or, if you're not much of a blogger, we have a ton of other volunteer opportunities available. Email me at President@HydranencephalyFoundation.org for an application and more information!