Tuesday, October 16, 2012

BEE AWARE: FUN Globe-Trotting Awareness Event

Global Hydranencephaly Foundation is proud to be teaming up with our friend, Heather, at Molly and Milly's ZooCephaly (Globe-Trotting Awareness Animals). Here's a little about her mission:

"The purpose of Molly and Milly's ZooCephaly is three-fold. First and foremost, it is an ever growing outreach endevour to spread both awareness as well as hope among the community of childhood neurological disorders. Molly and Milly began their journeys first among the Microcephaly community. They have visited over 20 families between them, picking up memories, pictures and stories from each of those amazing families from all over the USA as well as Canada and the UK to share on the FB page and the blog. We are adding more communities with the addition of three new stuffed GLOBE TROTTING ANIMALS: Leo the Lissencephaly Lion, Sunny the Schizencephaly Bear and Bennett Buzz-Bee the Hydranencephaly Bee.They will all start their Globe Trotting as soon as possible."

This is the traveling Bennett Buzz-Bee, minus the Gucci logo on the bandana:

Bumble Bee Pillow Pal Stuffed Animal with Bandana, Price/piece

1.) Fill out this mini-form and message it to ZooCephaly Globe-Trotting Awareness Animals FB page or a personal message to mission founder, Heather Tuttle Sklar

Animal(s) of Interest: "Bennett Buzz-Bee"

Your Name:

Your Child's FULL Name:

Brief description of child's disorder:

Address where you want us to send the animal:

2.) I will contact you with an estimate of the month you will receiving the animal.

3.) I will then contact you when the animal has left the previous family's home.

4.) Once you receive the animal, you will find the animal in the box, with the following items (contact me asap if something is missing):

(a.) A journal 

(b.) a small photo album 
(c.) a bag or collection of items that the animal may have collected along the way. 

(d.) a purple tiny monkey for Milly, a Sock Monkey key chain for Molly and a bunny for Sunny. 
*** Sometimes you will also find a gift from the last family for your child. 

5.) Let me know as soon as you get the visiting animal. I will then send you the address of the next family on the list.

6.) You are to keep Milly, Molly, Leo, Penny, Sunny or Bennett Buzz for a week (if something happens to prevent you for sending the animal on after 1 week, let me know as soon as possible!)

7.) While the animal is with you, have lots of fun!

- Take lots of pictures. 
- Put some pics in the included photo album (if the album is full, let me know if you want me to send you a new one or if you are able to donate a small one). Post some photos on the facebook page and/or send me some on my personal FB account ~ Heather Tuttle Sklar)
- Please, use two or three pages of the journal to write about your visit with Milly, Molly, Penny, Leo, Sunny, Bennett Buzz-Bee (write as if you were that animal).
- Find something to represent the state or area in which live to add to the animal's collection

8.) On the 6th or 7th day of the animal's visit get her/him ready to be put in the mail. Check the list above and put them all back in the box.

9.) Send Molly, Milly, Penny, Leo, Sunny, Bennett Buzz-Bee on his/her travels!

We REALLY hope you all will participate and make this a fun-filled adventure around the world!! Bennett Buzz-Bee is happy to visit angel homes to visit places of rest, memorial gardens, & favorite places in the angel-bee's hometown. 

Thursday, October 11, 2012

Thoughtful Thursday: Bee-ism

Visit our Facebook page for an ever-growing album full of bee-isms, most featuring our own little bees living with hydranencephaly... partnered with words of wisdom and inspiration you are sure to value.

Monday, October 8, 2012

BUZZ: Tickets on sale NOW!


There are two types of tickets for sale, visit our WEBSITE to purchase yours today.

The main ticket is for the FULL CONFERENCE WEEKEND. This ticket will include:

Saturday morning breakfast
ALL activities/classes/meetings/instructional tables/vendors and KEYNOTE addresses! (8 am until 9:30 pm)
Catered Luncheon on Saturday (expect some awesome surprises at the luncheon)
Saturday evening Dessert Bar before KEYNOTE addresses
Sunday Morning Breakfast
Sunday Morning Program/Activities
Participation in Drawings for Prizes
ONE GOODIE BAG PER FAMILY (will be valued at least $100)

The FULL CONFERENCE TICKET will be priced at $100.00 for first ticket, and all additional tickets purchased by same family/person will be $90.00 each.

The second type of ticket is the FAMILY DAY TICKET. This is an additional ticket for extra caregivers, family members and friends you may have with you, who will not attend the Saturday conference day, but will attend FAMILY DAY activities with you on Sunday!

The family day tickets are not a stand alone ticket and may only be purchased WITH at least one FULL CONFERENCE TICKET.
Family Day Tickets cost is to cover expenses of the breakfast only, and so these tickets will be a minimal charge of $15.00 for adults and $5.00 for children.

This ticket includes:
Sunday Morning Breakfast Buffet
ALL Sunday Program and Activities


1. Hydranencephaly Children are our guests of honor. They may attend all activities both days and do not need a ticket for anything! (As with all GHF activities, this includes those children who have had the diagnosis of hydranencephaly AT ANY TIME and those children who are "grandfathered" into our support group even though their diagnosis may have changed over time).

2. The only meal not included for the two day conference is Saturday evening dinner. There will be a dinner break for families to have dinner on their own or with other families (we will try to coordinate a location for those families who wish to meet in a group dinner setting - more details as time gets closer on this). You will have from 5:00 pm - 6:30 pm for dinner. We will reconvene at 6:30 pm and there will be a dessert bar set up for conference attendees to take a dessert into the KEYNOTE meeting. SO save room for dessert!

3. Saturday's conference is for those parents/caregivers/friends/family who are ages 16 and older. The only exception to this rule are the hydranencephaly children. Please keep this in mind when planning, as you will need to have someone with your party, who is not attending the Saturday conference to watch your younger family members. There will be no babysitting available due to liability issues with the venue. However, there are a myriad of things to do in the immediate vicinity of the hotel to keep young ones occupied by their designated caregiver on Saturday! Movie theaters, malls, the indoor pool at the hotel are some of the ready activities!

4. In order to participate in Sunday family day activities/breakfast you must have purchased at least ONE FULL Conference Ticket! This is to assure that families get the full benefit from the hydranencephaly conference and that they are able to come and take advantage of the FULL weekend! Sunday's Family Day is an "extra" bonus so that entire families on the support group can meet and mingle with one another and have a relaxed good time together! Saturday is our day of learning and growing!

We are so pleased to have the opportunity to organize and present this conference for our families!! It has been a HUGE effort to produce, and we want to thank the marketing committee members, Marianne Nevil, Dru Springer, Linsey Mckee, Devoney Wolfe, Jessica Zuchowski, especially and all others who are donating time and resources to make sure this is the best conference it can be!


Saturday, October 6, 2012

Cute-as-can-BEE: Halloween Edition

Over on our Facebook page, we are hosting a photo contest featuring costumed cuties... both heavenly & earthly angels who have been given a diagnosis of hydranencephaly. Head on over and "like" our page... then vote for your favorites!! If you'd like to submit your own bee, email submissions to President@HydranencephalyFoundation.org

Our Wordless Wednesday posts will also feature our Cute-as-can-BEE submissions in all their Halloween cuteness as well! So, be sure to catch a heavy dose of adorable... right here on Wednesdays!

Friday, October 5, 2012

Flashback Friday: The Beginning

As our foundation has grown and brought more awareness to hydranencephaly, I have had a few questions about who we are and where we came from. So, just a quick little snippet of our organization's birth and growth:

Our foundation began as a dream in the fall of 2010; but, with the help of a group of highly-motivated and passionate ladies, the dream became a reality. GHF incorporated in the Commonwealth of Virginia in June 14, 2011 as Brayden Alexander Global Foundation for Hydranencephaly. By November, we had realized that there were many misconceptions and a great amount of confusion associated with the name and adopted our doing business as name: Global Hydranencephaly Foundation.

While we are not officially a 501c3 tax exempt organization as of yet (lessons learned along the way), that should be coming any day and is retroactive to our date of incorporation... is my understanding.

Essentially, the name changed... however our mission and vision has been the same all along:

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.

We are not, however, associated with any other hydranencephaly organization; we are a separate entity with differing views and separate goals. If you don't see "Bennett Buzz-bee" who was trademarked along with our logo, then we didn't approve the information and/or materials you see.

We maintain an open door policy and are completely forthright with information regarding organization and management of our business and finances. Please contact our founder & president, Alicia "Ali" Harper at President@HydranencephalyFoundation.org, should you have any questions or concerns about our foundation.

Thursday, October 4, 2012

Bee-Inspired: Clay Dyer

Clay Dyer will be one of the keynote speakers at our first Global Hydranencephaly Conference in Dallas, TX, June 14-16, 2013. 

If you've never heard of Clay, professional sport bass fisherman born without any lower limbs, no arm on the left side and a partial arm on the right. His motto for life is "If I can, you can.", take the 10 minutes it takes to watch this video and bee-inspired:

Tuesday, October 2, 2012

BUZZ: Fundraising Partnership

Our friend, Loretta, has graciously offered to host an online party with Grace Adele, a Scentsy family of brands. Details are below, shopping runs from now until November 15.