Wednesday, June 5, 2013
Tuesday, June 4, 2013
Ok, so it's not official... however, we are not the kind of organization to back down from adversity or obstacles. Afterall, our little bees just wouldn't allow it!
100,000 signatures to obtain in a timeframe of a mere 30-days in order to petition the Obama administration is a large order. Our hope of making the plea an official motion has not fizzled out, but the goal is a long stretch for a special needs community representing only one in 100,000 births worldwide, and only 250,000 in the United States. Thus, a new plan of attack is in order!
However, as we plan this new method of approach in making this a formal declaration, we will honor the month of June as hydranencephaly awareness month UN-officially. Starting this year, 2013, we will continue to honor the entire month of June as awareness month for hydranencephaly.
Our parent organization, Brayden Alexander Global Foundation for Hydranencephaly, was formally incorporated on June 14, 2011. The reason June was the goal for incorporation was that the inspiration behind the project, Brayden Alexander Harper, was born on June 30, 2008. His little life was the fuel that turned this dream in to a reality and a way to keep his little light shining long after he has left this earth. The organization is a way to bring reality to the face of hydranencephaly, despite the medically subjected impossibilities that are portrayed in the professional community.
We hope you will join us in recognizing the efforts of our foundation and the passion of our families by learning more about hydranencephaly and sharing the information we provide here, via our YouTube channel, on both or our websites, and via our Facebook page and Twitter feeds. Links to all are listed below: