FIRST ANNUAL HYDRANENCEPHALY CONFERENCE
CLICK HERE FOR OUR MARKETING PACKET
CLICK HERE FOR OUR MARKETING PACKET
TICKET ANNOUNCEMENT AND DETAILS:
There will be two types of tickets for sale.
The main ticket is for the FULL CONFERENCE WEEKEND. This ticket will include: Saturday morning breakfast ALL activites/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) Special Angel Mom SPA activity generously donated by ^Andrew^ Garcia's birth family and facilitated by Sarah Garcia on Saturday afternoon 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 $120.00 after 5/25/2013
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 and activities, 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
HERE ARE SOME THINGS TO NOTE:
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!
On June 14th , 2013 Global Hydranencephaly Foundation will sponsor the first ever GLOBAL HYDRANENCEPHALY CONFERENCE! We are VERY proud to announce that we have not one, not two, but THREE firm commitments for our evening of Keynote addresses! First, We will have the extreme pleasure of hearing from Janice Johnson, the mother of Travis Johnson, our oldest "bee" (at age 32) on the Family to Family Resource Group! Janice will have many words of wisdom to share with those of us who have only been parenting our hydranenecephaly children for a "short" time on this journey of love! We are so honored she has accepted the invitation to speak about her experiences with Travis, and what she has learned on this long and arduous path of advocating for our children! THANK YOU JANICE for your acceptance! We can't WAIT to hear from you and Travis!!
Second, we will have th e honor of hearing from Ms. Lisa Walker, International Speaker, Trainer, Coach and Co- Author of How 8 People Went from Ordinary to Extraordinary in 30 Days...And You Can Too! More about Lisa later, but she will have some powerful tips for SUCCESS in keeping with our theme!
And third, our final Keynote speaker will be a special treat for our dads who will be attending (it will be Father's Day weekend, after all!)! Meet Clay Dyer! Clay’s motto for life is, “If I can, you can.”
Clay Dyer was born on May 23, 1978, without any lower limbs, no arm on the left side and a partial arm on the right. However, these limitations did not dampen his determination and positive spirit.
Clay began fishing at age 5. A natural competitiveness became evident early. Clay never allowed his physical disabilities to be an obstacle and began competing in fishing tournaments at age 15. He became a professional angler in 1995 and fished in the “major leagues” on the FLW Tour for 4 years.
Clay spends the majority of his time sharing his life experiences through motivational and leadership presentations to various companies, charities and churches. Clay is also a volunteer athletic coach at Hamilton High School in Alabama. Clay currently fishes the Bassmaster Open Series and select charity events.
Clay’s television appearances include ESPN, Fox, CNN Headline News, Versus, the Outdoor Channel, Fox Sports South, the 700 Club and CBS. Published articles about Clay have appeared in USA Today, Newsweek, Bassmaster, FLW Outdoors Magazine, and many more.
We are so privileged to be able to hear from Mr. Dyer, and know you will be inspired and uplifted by him!
Updating Conference Schedule now that more details have been organized!
Friday, June 14, 2013 - Arrival Day:
Check in to hotel – anytime after 3pm. Families can relax after a long day of travel, go do something fun, or just hang out with other families that are arriving also. Possible reservations for families that are interested for dinner somewhere close by (more info as time gets closer).
Pre-registration at hotel from 8 pm to 10 pm. At this time, you will pick up conference schedule, goodie bags (you are SO going to love these!!) , and get name badges!
Saturday, June 15 - Conference Day:
For those not arriving on Friday, you will need to be at the Marriott for registration (picking up goodie bags, class schedule, and name badges) by 8 am.
NOTE::Those families staying at the Marriott on Friday night will have breakfast buffet offered during registration time (four people per room).
• Registration: 8 am – 9 am
• Opening remarks 9am - 9:30 am
• Panel Discussion: 9:30 am - 11:00 am (Floor will be open for questions, to be answered by a panel of experienced hydran moms! )
• Catered Luncheon: 11:15 am – 12:30 pm (For conference attendees and hydranencephaly children)
• Classes (round robin): 1 pm – 5 pm
Round Robin classes means that attendees will be divided into three groups. There will be three main classes and each group will rotate through the three classes. This way no one will miss any of the main classes offered. For those who do not wish to attend one or more of the featured classes, there will be instructional tables set up along with vendor booths from Noon to 5 pm.
Class 1 : Benefits of Music Therapy and Use of Assistive Technology
Class 2: Sensory Stimulation and Sensory Rooms
Class 3: Understanding the IEP process and how to navigate School Educational System with a special needs child.
** Concurrently with classes, there will be an Angel Mom/Dad meeting and activities overseen by Sarah Garcia (more info to come) specifically for our Angel Families!
VENDORS WILL BE PRESENT AT BACK OF MAIN CONFERENCE ROOM FROM 12:)) PM UNTIL 5:00 PM, ALONG WITH INSTRUCTIONAL TABLES (some possible instructional tables.....nutrition, waterway babies, scrapbooking, creating a medical book for your child. etc)
• Break for dinner on your own from 5:00 pm til 6:30 pm
• At 6:30 pm a catered Dessert Bar will be set up for conference attendees and hydran children. Attendees may help themselves to dessert and proceed to the main conference room for
** Keynote and other speakers: 7 pm – 9:30 pm
Sunday, June 16th - Family Day/Farewell:
Breakfast buffet begins at 9:00 am for ALL attendees and their families/caregivers (for family members/caregivers/etc who are not Saturday conference attendees, there will be a nominal charge for breakfast and Sunday program attendance)
* Final Program begins at 9:30 am and ends at 11:30 (Check out is at noon)
- Talks by BOD/Assigned Speakers
- Music Program - Jerry Garcia
- Father's Day Video/presentation of father's day crafts
- Final Farewell address
NOTE: Hydran children are invited to attend any and all activities and are our guests of honor!! Feel free to bring them into ALL conference activities both days!!
(Babysitting will not be provided for other children (due to liability issues), so be sure and bring someone to help with siblings while you and your hydran child attend the conference on Saturday. Sunday is family day and everyone you have with you may attend.)
DISCLAIMER: Please be advised that the resources, information, and advice given via our web or blog sites, the family-to-family resource network, our Facebook page,
and any other online publications or discussions is not given by medical professionals. Instead this information has been a collective effort of parents/caregivers of children
with hydranencephaly, as well as the research of individuals who are interested in contributing to our mission of educating and raising awareness. We ask that you use caution
when utilizing this information in caring for your child, as we are not liable for any negative consequences that may occur. Children are individuals, what works for one may not work
for another, therefore consultation with a medical professional should be sought prior to making changes that directly influence your child's health, medication, and/or treatment plans.