Saturday, December 31, 2011

A New Beginning: 2012

"From small beginnings come great things."

Welcome to a New Year! We have evolved as a nonprofit, still awaiting our 501c3 tax exempt status, and learned so much as we've worked to where we are now. We have amazing support and look forward to what exciting things are to come. Just to recap our progress:

“The beginning is the most important part of the work.”

In June, the 14th to be exact, our foundation was registered in the Commonwealth of Virginia as a not-for-profit corporation. We began work under our parent name, Brayden Alexander Global Foundation for Hydranencephaly, but have learned that this brought it's own complications and misconceptions... hence the new name of Global Hydranencephaly Foundation.

"We must always change, renew,
rejuvenate ourselves otherwise we harden."
~Johann Wolfgang von Goethe~

Though we have since adopted a "doing business as" name for ease of use, our mission remains the same:

"Through the Global Hydranencephaly Foundation, a greater passion will be shared as families are networked across the globe to ensure every child given this diagnosis has the opportunity to live and thrive in the quality of life they deserve. Families will be offered support, information, guidance, and resources. Through education and awareness campaigns, the medical community will become enlightened to the possibilities that exist for these children and the world will learn to accept this condition as simply an obstacle in the lives of these little miracles."

and our focus is on our families that we network. This blog is our means for doing so, for sharing the wonderful lives that our little "bees" live and work together at changing the many medically subjected misconceptions that exist in the world. Our goal is to involve our families with blog submissions and organization of events across the globe as we are able...

We have an amazing team of volunteers who work tirelessly behind the scenes to do research, graphic design, coding of the web sites, merchandising planning, organizing everything we have accomplished, and so much more. While we are fueled by the support of you all, I personally am fueled by the passion that exists in those who have done such amazing things to help a small dream become a growing reality... and of course the inspiration of one little man I get to be mommy to (read the tribute HERE).

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” 
~Margaret Mead~

With the adoption of our new name came an amazing new look for our web sites, both our primary and our informational sites got a face-lift, and the debut of our first foundation newsletter. Those aforementioned volunteers have been organized in to committees for marketing, research, and merchandising to prepare for huge endeavors in the new year. Facebook proves to be a growing network of support and organization of our mission as well, primarily by means of our Hydranencephaly Family-to-Family Resource Network where families from across the globe are together in one virtual "room" to offer guidance, support, and information at a moment's notice. In addition we have our own Facebook page as well, where we have just announced our holiday photo contest winner and one of our newest additions to our network of amazing little bees, Ezhikel from the Philippines:

Our exposure does not stop there, you can not only find us on Twitter but have also launched our very own YouTube channel which will be one of our focus areas of the new year, full of opportunities to share in the joy our little ones bring to the ones who take the time to know them. 

We cannot fail to mention our line of awareness jewelry merchandise created by Sonya at Sonyarita Designs on Etsy. She does amazing work and is constantly creating new items to add to the store, be sure to follow her page on Facebook as well!

I hope you all will continue to support our foundation and help us to expand across the globe on to various platforms... we have some pretty wonderful plans in the coming months and we hope you stay in touch so as to not miss a thing! 

Feel free to contact any of us at any time should you have any questions, comments, or words of wisdom for us:

Ali, President
Heather, Vice President
Angela, Treasurer
Holly, Secretary
Sarah, Media Specialist
Jennifer, Family Liaison 

"When faith and hope fail, as they do sometimes, we must try charity, which is love in action. We must speculate no more on our duty, but simply do it. When we have done it, however blindly, perhaps Heaven will show us why."
~Dinah Maria Mulock~

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