What is the Family Conference on Holoprosencephaly?
The Family Conference on Holoprosencephaly is the only conference in existence focusing on the topic of Holoprosencephaly (“HPE”) and is a model among rare disorders in that it brings together leading research scientists and clinicians, infants and children with HPE, and the families who love them.
Held biennially, this four-day conference is for families and persons who are affected by HPE, their extended families and caregivers. The conference is conducted by Families for HoPE, Inc. in collaboration with the Carter Centers for Brain Research in Holoprosencephaly.
Conference objectives are to outline recent advances in the understanding of HPE; discuss the optimal clinical management of patients with HPE; educate families of treatment options; expose families to therapeutic strategies; explore options for medical equipment to improve quality of life; and provide for family networking and support.
Lectures and Presentations
Utilizing world-renowned subject-matter experts, the HPE families are provided with lectures and presentations addressing research, clinical and therapeutic management and day-to-day living.
Educational and Enriching Workshops
Families will also have the opportunity to attend educational and motivational workshops during the conference, such as:
- Making Difficult Decisions for Your Child
- Making Relationships Work While Raising a Child with Special Needs
- Finding Hope Following the Death of a Child
- Taking Care of the Caregiver
- Fathers: Balancing Work and Home Life
- SibShops for Siblings
- Grandparents: When to Step Forward; When to Step Back
- Therapies (OT, PT, SLP)
- Sensory Integration Therapies
- Cortical Vision Impairments
- Dental Challenges
- Service, Therapy, Companion Animals
- Transition from Early Intervention to Preschool
- Seating, Positioning, and Mobility
- Home and Vehicle Modifications
During the conference, we conduct a memorial ceremony and read aloud the names of the children with HPE who are deceased. This remembrance ceremony is followed by a special celebration of life bubble-blowing activity which provides healing for our bereaved families.
Various other family-friendly activities are planned to promote interfamily communication, fellowship, and teamwork. These activities will also include age-appropriate and developmentally-appropriate activities for all children in attendance.
Not one of these families asked for their child to be born with the severe disability of HPE; however, each family has made the best of a very difficult situation. In this era of information technology and family-centered care, these families have educated themselves about a condition that very few understand. This conference provides them with increased knowledge and understanding of the science behind the diagnosis; yet, also addresses the hope that exists beyond the heartbreak.
The Carter Centers seek to educate families and advise them on clinical management and research. Families for HoPE seeks to educate families and offer them support and encouragement. Together, we are turning HPE into HoPE! Please join us in this journey of hope.