Registration is open for 2016 Family Conference on HPE
We want you to join us as A Family of HoPE at the 2016 Family Conference on Holoprosencephaly in Dallas, Texas on July 12-15 presented by Families for HoPE, Inc. and Carter Centers for Brain Research in Holoprosencephaly and Related Malformations.
This conference is for families and persons who are affected by HPE, their extended families and caregivers. We welcome those who have loved and lost someone affected by HPE and will have special sessions dedicated to bereavement topics. The two days of conference sessions will provide you with information you need to help you better manage the day-to-day life issues you and your family face when caring for or missing a child with HPE. The final day of the conference will be to celebrate together at our first-ever HoPE PROM!
Siblings are invited and encouraged to attend! We will have special activities for siblings ages 13 and older which will include off-site field trips. We will have childcare on site for children ages 12 and younger and special activities for our children with HPE.
The 2016 registration fee is $125 per family. If your family requires assistance with the registration fee, please contact Roxanne@FamiliesforHoPE.org. Please register prior to June 1, 2016.
2016 registration form – Click here to download the registration form. Please print the form, complete pages 3 and 4 then scan and send via email to Roxanne Steele at Roxanne@FamiliesforHoPE.org. To pay your registration fee online via credit card, please use this link. Click here to pay the conference registration fee via credit card
You may also mail the completed form and a $125 check payable to Families for HoPE, Inc. at:
Families for HoPE, Inc.
c/o Roxanne Steele
401 SW H Street
Richmond, IN 47374
Objectives for the Conference
Outline recent advances in the understanding of HPE
Discuss the optimal clinical management of patients with HPE
Provide for family networking and support
Educate families on treatment options
Expose families to therapeutic strategies
Explore options for medical equipment to improve quality of life
Presentations/Workshops (may be subject to change)
NIH Research Update
Caregiver Burnout/Self Care
Vehicle and Home Modifications
Do-It-Yourself Sensory Ideas
HPE from a Sibling Perspective
Dads with HoPE
HoPE, Grief & Beyond
Tuesday, July 12 – Arrival and evening social time at the hotel including “Moms’ Night” activity. Complimentary beverages and “small plate” food offerings from 5-7pm. Please plan to sign your release forms and pick up your conference materials and t-shirts.
Wednesday, July 13 – 9am-5pm Conference sessions and catered lunch at Texas Scottish Rite Hospital. If you are not staying at the Homewood Suites, please arrive early to sign your release forms and pick up conference materials and t-shirts. Complimentary beverages and “small plate” food offerings at the hotel from 5-7pm. Special vendors at the hotel from 5-8pm. Socializing and swimming.
Thursday, July 14 – 9am-5pm Conference sessions and catered lunch at Texas Scottish Rite Hospital. Complimentary beverages and “small plate” food offerings at the hotel from 5-7pm. Special vendors at the hotel from 5-8pm. “PJs and Movies” for the kids. Dads’ activity to be held.
Friday, July 15 – Sleep in/swim/socialize. Light lunch provided by Families for HoPE. Then, powder your nose and shine your shoes because you will be getting ready for the first-ever HoPE PROM! Join us in the evening at the Dallas World Aquarium for dinner, dancing, and more.
Children 12 years-old or 6th grade and younger – Childcare at the conference site provided by Texas Scottish Rite employees and volunteers. Arts and crafts, music, movies, playground time, snacks and more!
Children 13 years-old or 7th grade and older – Adult-supervised fun, team-building and social activities to be held off-site on Wednesday and Thursday. Lunch and snacks will be provided. Adult siblings are welcome to attend some or all activities.
Families are encouraged to stay at:
Homewood Suites by Hilton
2747 North Stemmons Freeway
Dallas, Texas 75207
Group rates of $119 for a 1-bedroom king bed suite or $139 for a 1-bedroom double bed suite have been secured. This hotel features all suite rooms with refrigerators, a complimentary full hot breakfast daily and complimentary evening hot snacks and beverages. The hotel has an outdoor pool and large areas for families to gather and socialize.
The time at the hotel is often one of the favorite social opportunities for families. Therefore, we encourage you to call the hotel and reserve your room today!
To make reservations:
- Call the hotel directly at 214-819-9700, ask for “reservations” and reference our group code “FFH”
- http://www.dallasmarketcenter.homewoodsuites.com After selecting dates, enter the group code “FFH” under the group/convention code section.
You will be required to secure your reservation with a major credit card.
In an effort to help our conference better fit into your budget, Families for HoPE has funds available to assist HPE families with up to 4 nights in a suite at Homewood Suites by Hilton/Dallas-Market Center (Tuesday-Friday). Please indicate the number of nights you are requesting on the attached registration form.
Dallas/Fort Worth International (DFW) is approximately 18 miles from the hotel.
Dallas Love Field (DAL) is approximately 3 miles from the hotel. If you arrive during the day, the hotel will provide shuttle service to and from Love Field at no additional charge. (Shuttle is not handicap accessible.)
Hello, my name is Julie Gallagher currently living in Scotland with my one year old son, Jordan, who has Alobar holoprosencephaly’. He is registered with yourselves at the Carter research centre. I’m wondering if possible could I, in any way possible be part of the conference which is due to take place this year by Skype or any other video form please? I completely understand this is a massive ask however there is very limited knowledge in the U.K. At present on my sons condition and I would love nothing more than to be part of what seems like a HOPE family in the United States! My son Jordan has beaten every odd against him so far and continues to put up a fight to be in this world!
To the world he is one person, to me, he is the world!
I would be truly greatful for any response from yourselves and thank you for taking the time to read this.