2016 Conference Registration Frequently Asked Questions

2016 Conference FAQ

Q:  If I pay online for the conference fee, do I still need to complete the separate registration form and mail or email to Roxanne Steele/Families for HoPE?

A:  Yes, each family needs to complete a registration form.  If you pay your registration fee online, you will receive a confirmation reminding you to submit your registration form.


Q:  When do I need to register?

A:  Registration is now open, and we ask that you please register by June 1, 2016.  We will accept registrations after that date but cannot promise that you will have t-shirts available at the time of the conference.  We need 4 to 6 weeks to get shirts printed, menus set, etc.


Q:  What if I pay the registration fee but then cannot attend the conference?

A:  If you cancel your registration before the June 1 registration deadline, please contact Roxanne Steele as soon as possible to make arrangements for a refund.  If you cancel your registration after the June 1 deadline, your registration fee will be considered a charitable donation, and we will issue a receipt to you for federal tax purposes.


Q:  Do I need to make my own hotel reservations?

A:  Yes, we encourage everyone to book their rooms at the conference hotel as soon as possible.  A credit card will be required in order to reserve your room(s).  If you are requesting assistance with funding your hotel stay, it will be helpful to us if you would include your hotel confirmation number on your registration form.


Q:  How will I know if my registration is received?

A:  We will contact you via email to let you know that your registration form and registration fee have been received.  We will review your registration form and will contact you for follow-up if we have additional questions.  Between now and the conference, we will provide updates on the Families for HoPE website and share additional details about what to expect at the conference.


Q:  Who can I bring to the conference?

A:  This event is referred to as the “Family Conference on HPE” because it is for the entire family.  It is our hope that each member of the family will find the conference to be meaningful and personal.  In addition to the immediate family of the individual with HPE, we often have extended family members and others attend who are involved in our families’ lives.  It is common to have grandparents, aunts, uncles, nurses, caregivers, friends, etc. in attendance.

In an effort to keep the conference affordable for our HPE families, we have elected to charge a registration fee of $125 per family to attend.  If you will have more than 2 guests attending in addition to your immediate family, please contact Roxanne Steele to inform her of your additional guests.  Depending upon the number of additional guests you bring, we may ask you to consider a donation to Families for HoPE to help cover some of the additional expenses.  We understand that many different family situations occur and will work with you to ensure everyone has a wonderful experience.  For further questions please call or email Roxanne Steele, conference registrar.


Q:  I need help with the registration fee or hotel fees in order to attend, what can I do?

A:  Please contact Roxanne Steele directly.  Roxanne is the single contact point for registration and she will work with the Families for HoPE board to assist as many families as possible.  We hope that once your travel to Dallas, you find that most other needs are included in the conference fees and activities.  All meals from Tuesday evening to Saturday breakfast are included either by the hotel, Carter Centers or Families for HoPE.


Q:  How do I contact Roxanne Steele?

A:  Email to roxanne@familiesforhope.org is the best method but you may also text or call Roxanne at: 765-977-1250 between 9am and 10pm EST.  Please leave a message if you reach voicemail.

Mail registration form to Families for HoPE, Inc., c/o Roxanne Steele, Secretary, 401 SW H Street, Richmond, IN 47374  USA


Q:  Are there charges for parking?

A:  Parking at the hotel and hospital conference center is free.  There is a small fee to park at the Dallas World Aquarium for the Prom on Friday.


Q:  Are the siblings required to participate in the children events?

A:  No, but you and your children will find that those activities are fun and more enjoyable than sitting in discussions and workshops with adults.  Teen siblings should be highly encouraged to participate in their special activities where they will also feel special and important.  We work very hard to make these conferences a family event with fun, meaningful activities for everyone.  Between now and the conference, we will provide updates on the Families for HoPE website to share additional details about child care and activities being coordinated by the staff and volunteers of the Texas Scottish Rite Hospital for Children.


Q:  My child’s physician/therapist has expressed an interest in attending the conference to learn more about HPE.  Is this possible?

A:  Yes, please contact Roxanne Steele regarding professional registrations.  We welcome the opportunity to have professionals interact with our experts and families.

One Comment on “2016 Conference Registration Frequently Asked Questions”

  1. Hi my name is latasha Benson and my daughter just recently died she was two and a half weeks and she was diagnosed with hpe when I was 18 weeks pregnant. I wanted to join your organization and help and organize an walk here in Detroit mi for this causes