2024 Virtual Conference on HPE
For the first time in its history Families for HoPE offered a virtual Conference on Holoprosencephaly making it accessible for families touched by HPE anywhere on the globe.
This 4-day conference was recorded so that it could be viewed allowing all participants independent of location to gain information and insights to enhance parent-to-parent support, increase self-care, learn the keys to successful financial planning to support a child or adult with special needs, and to ensure optimal care for a child with HPE. The conference program includes presentations by leading medical professionals and geneticists, and others offering information and resources to help families learn, grow and thrive.
Opening Session
Welcome and Introduction
Presented by Steve Harley and Susan Milllender
Healing Meditation/Relaxation – Take time to breathe, relax and rejuvenate; learn skills you can put into practice anywhere, anytime, everyday
Presented by Tamara Winfrey-Harris and River Sturdevant, PhD
Remembrance Program – Reading of the names to honor those who have passed away with a diagnosis of HPE
Presented by Arika Gates and Leslie Harley
Day 1, Morning Session
Holoprosencephaly and the Carter Centers for Brain Research: Overview and history
Presented by Nancy Clegg, BSN, MSN, PhD, CCRP
Medical Nutrition for Children with Developmental Disabilities: How to quantify adequate growth when your child doesn’t fit the standard growth charts
Presented by Janice Scott, MS, RD, CSP, LD
Day 1 – Afternoon Session
HPE Diagnosis and Finding Answers: What’s new in genetics?
Presented by Paul Kruszka, MD, MPH, FACMG, Chief Medical Officer, GeneDX
Family Caregiver Support Overview: What it is and why it is so important to family wellness
Presented by Angela Shierk, PhD, OTR and Joe (JD) De La Torre, III, OTD
Day 2 – Morning Session
Update on HPE genetics research data findings
Presented by Seth Berger, MD, PhD, Attending Geneticist and Metabolist, Children’s National Hospital and Assistant Professor of Pediatrics and Assistant Professor of Genomics and Precision Medicine at George Washington University School of Medicine and Health Services
Open discussion/Q&A with parents to unpack information and ideas on diet/nutrition
Presented by Janice Scott, MS, RD, CSP, LD
Day 2 – Afternoon Session
Practical Applications/Training for Family Caregiver Support
Presented by Heather Roberts, OTR, Texas Scottish Rite Hospital and Joe (JD) De La Torre, III, OTD
Beyond Bereavement: Finding HoPE again
Presented by Steve and Leslie Harley
Day 3 Sessions
Special Needs Trusts and ABLE Accounts
Presented by Gordon F. Homes, Jr., CFP, CLU, ChFC, CASL
Government Benefits and Programs
Presented by Gordon F. Homes, Jr., CFP, CLU, ChFC, CASL
Ambassador of HoPE Program
Presented by Steve Harley and Susan Millender
2024 Virtual Conference on HPE
For the first time in its history Families for HoPE offered a virtual Conference on Holoprosencephaly making it accessible for families touched by HPE anywhere on the globe.
This 4-day conference was recorded so that it could be viewed allowing all participants independent of location to gain information and insights to enhance parent-to-parent support, increase self-care, learn the keys to successful financial planning to support a child or adult with special needs, and to ensure optimal care for a child with HPE. The conference program includes presentations by leading medical professionals and geneticists, and others offering information and resources to help families learn, grow and thrive.
Opening Session
Welcome and Introduction
Presented by Steve Harley and Susan Milllender
Healing Meditation/Relaxation – Take time to breathe, relax and rejuvenate; learn skills you can put into practice anywhere, anytime, everyday
Presented by Tamara Winfrey-Harris and River Sturdevant, PhD
Remembrance Program – Reading of the names to honor those who have passed away with a diagnosis of HPE
Presented by Arika Gates and Leslie Harley
Day 1, Morning Session
Holoprosencephaly and the Carter Centers for Brain Research: Overview and history
Presented by Nancy Clegg, BSN, MSN, PhD, CCRP
Medical Nutrition for Children with Developmental Disabilities: How to quantify adequate growth when your child doesn’t fit the standard growth charts
Presented by Janice Scott, MS, RD, CSP, LD
Day 1 – Afternoon Session
HPE Diagnosis and Finding Answers: What’s new in genetics?
Presented by Paul Kruszka, MD, MPH, FACMG, Chief Medical Officer, GeneDX
Family Caregiver Support Overview: What it is and why it is so important to family wellness
Presented by Angela Shierk, PhD, OTR and Joe (JD) De La Torre, III, OTD
Day 2 – Morning Session
Update on HPE genetics research data findings
Presented by Seth Berger, MD, PhD, Attending Geneticist and Metabolist, Children’s National Hospital and Assistant Professor of Pediatrics and Assistant Professor of Genomics and Precision Medicine at George Washington University School of Medicine and Health Services
Open discussion/Q&A with parents to unpack information and ideas on diet/nutrition
Presented by Janice Scott, MS, RD, CSP, LD
Day 2 – Afternoon Session
Practical Applications/Training for Family Caregiver Support
Presented by Heather Roberts, OTR, Texas Scottish Rite Hospital and Joe (JD) De La Torre, III, OTD
Beyond Bereavement: Finding HoPE again
Presented by Steve and Leslie Harley
Day 3 Sessions
Special Needs Trusts and ABLE Accounts
Presented by Gordon F. Homes, Jr., CFP, CLU, ChFC, CASL
Government Benefits and Programs
Presented by Gordon F. Homes, Jr., CFP, CLU, ChFC, CASL
Ambassador of HoPE Program
Presented by Steve Harley and Susan Millender