About the Event


 Advances in genetic technology and evidence demonstrating clinical utility of a genetic diagnosis have increased demand for clinical genetics services which are limited outside of large metropolitan areas. We hope to engage the community around regional approaches to genetics services, partnerships with local non-genetics providers and innovative service delivery models. Wide Open Spaces aims to give a voice to patients, their families, and other individuals who may be affected by rare disease. 

Join us in beautiful Montana, the fourth largest state in the US with significant geospatial challenges yet a long-standing clinical genetics history. Let’s explore innovative models to provide genetic services, building the networks and pathways to expand access to genetic care within local communities.

AUGUST 2-3

June 16 05:00 pm
June 17 06:00 pm (MST)

NO TRAVEL NEEDED

NO TRAVEL NEEDED

GUEST EXPERTS

INTERACTIVE  SESSIONS

LEARN & NETWORK

LEARN & NETWORK

Agenda


7:30 AM
Breakfast
8:00 AM
Intro: Genetics services at the interface with families

Abdallah (Abe) Elias, MD

Chief Medical Officer Genetics, Shodair Children’s Hospital

8:00 to 10:15 AM
Session I: Re-thinking genetic service models in rural and resource-limited settings
8:30 - 10:00 AM

Erin Rooney Riggs, MS, CGC

Genetic Counselor, Geisinger Health System

9:00 - 9:30 AM

Austin Larson, MD

Clinical and Biochemical Geneticist at Children's Hospital Colorado

9:30 - 10:00 AM

Monica Wojcik, MD

Neonatologist and Clinical Geneticist at Boston Children's Hospital

10:00 - 10:15 AM
Q&A
10:15 AM
Break
10:30 - 12:00 PM
Session II: Tools for improving access to genetic information and testing.
10:30 - 11:00 AM

Ada Hamosh, MD

Clinical Director of the McKusick-Nathans Institute of Genetic Medicine at Johns Hopkins University School of Medicine

11:00 - 11:30 AM

Emily Fassi, CGC

Lead Oncology Genetic Counselor at the St. Luke's Cancer Institute

11:30 - 11:45 AM
Q&A
12:00 PM
Lunch
1:00 - 2:30 PM
Session III: Pharmacogenetics in diverse populations.
1:00 - 1:30 PM

Howard McLeod, PharmD

Center Director, Center for Precision Medicine, Utah Tech University

1:30 - 2:00 PM

Erica Woodahl, PhD

Director of the Skaggs Institute of Health Innovation at the University of Montana

2:00 - 2:15 PM
Q&A
2:30 PM
Break
2:45 - 4:00 PM
Session IV: Pediatrics Genetics 101 for non-geneticists
2:45 - 3:15 PM

Chad Haldeman-Englert, MD

Clinical Geneticist at Mission Fullerton Genetics Center in Asheville, NC

3:15 - 3:45 PM

Wesley Patterson, PhD, PA-C

Physician Associate at Greenwood Genetic Center, in Greenwood, SC

3:45 - 4:00 PM
Q&A
4:00 - 5:15 PM
Session V: The caregiver perspective
4:00 - 4:30 PM

Jennifer Banna, B.S.

Center Coordinator of the Rural Institute at the University of Montana

4:30 - 5:15 PM

Movie Screening: Unseen – How We're Failing Parent Caregivers & Why It Matters

5:15 - 5:30 PM
Final Remarks (Abe Elias)
7:30 AM
Breakfast
8:00 AM
Intro

Abdallah (Abe) Elias, MD

Chief Medical Officer Genetics, Shodair Children’s Hospital

8:30 AM
Family Day Welcome

Katherine Berry, MS, CGC

Senior Genetic Counselor, Shodair Children’s Hospital

9:00 - 10:15 AM
Family Grand Rounds

A moderated session with families and patients telling their stories about genetic diagnoses, experiences, challenges, and helpful resources.

10:15 AM
Q&A
10:30 AM
Break
10:45 AM - 12:00 PM
Resource Spotlight

5 to 10-minute presentations by statewide resource providers such as Disability Rights, the Montana Empowerment Center, Mountain States Regional Genetics Network, and others. An opportunity to submit written questions to be answered and returned after the day’s events.

12:00 - 1:30 PM
Lunch

Buffet lunch will be provided. Families are also encouraged to use this time to visit the Great Northern Carousel and Exploration Works science museum at no cost for attendees. Both are located next door to the hotel.

1:30 – 2:45 PM
Panel Discussion: Interventions for Different Age Groups

A moderated panel discussion with representatives of organizations that provide support for early childhood interventions, school-aged resources, and transition to adulthood for patients with special needs.

2:45 PM
Q&A
3:00 PM
Break and Community Time
4:00 - 5:15 PM
A Parent Perspective and Movie Screening
4:00 - 4:30 PM

Jennifer Banna, B.S.

Center Coordinator of the Rural Institute at the University of Montana

4:30 - 5:15 PM

Movie Screening: Unseen – How We're Failing Parent Caregivers & Why It Matters

5:15 - 5:30 PM
Final Remarks (Abe Elias)
5:00 PM
Doors Open
5:30 PM
Buffet Dinner Served
6:00 PM
Welcome and Introductions

Craig Aasved, Shodair CEO and Abe Elias, MD

Shodair Chief Medical Officer of Genetics

6:15 PM
Keynote Speech

Hal Dietz III, MD

The Johns Hopkins University School of Medicine

7:15 PM
A Patient Perspective

Alexandria (Allie) Carruthers

Loeys-Dietz syndrome patient

7:45 PM
Reception Opens
7:45 PM to 9:30 PM
Live Music

David and Deidre Casey

SATURDAY’S EVENTS WILL INCLUDE A SCREENING OF THE DOCUMENTARY “UNSEEN: HOW WE’RE FAILING PARENT CAREGIVERS & WHY IT MATTERS”

The film is an unfiltered glimpse into the lives of parents caring for children and adults with disabilities or complex medical needs and opens the discussion about what support is needed in our community.




A portion of the UNSEEN documentary viewing fee is supported by Mountain States Regional Genetics Network (MSRGN) Montana State team which is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $600,000.00 with 0 percent financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit HRSA.gov

Frequently Asked questions


Anyone with an interest in the healthcare system and how to better integrate genetic medicine into patient care. Doctors, nurses, genetic counselors, medical students, laboratory scientists, insurance providers, and anyone with an interest in the field of medical genetics.
Patients, family members, other caregivers, and our community of resources that help provide the necessary care for rare disease patients.
Everyone who wants to learn more about the medical genetics journey, hear a fascinating history of how a genetic cause of disease is discovered, studied, and treated, as well as how this kind of disease can affect a patient and those around them.
The symposium and family day are free events, with breakfast and lunch provided to attendees. The keynote speech and dinner has a cost of $50 per person.
Yes! If you are a genetics patient, a healthcare student, or employee of a non-profit agency that works in a related field and need financial assistance to attend, we may be able to help. Contact Corbin at cschwanke@shodair.org.