Provider agenda

Family day agenda

You are invited to attend Wide Open Spaces, a free symposium in Helena at the Great Northern on June 16/17. If you are interested in discussing local and regional care coordination at the interface of genetics and pediatric primary care and pediatric subspecialties, with experts from around country sharing their experiences, please consider attending!

It starts on Friday, June 16th with a kick-off dinner and reception with live music and keynote speech by Dr. Hal Dietz from the Johns Hopkins University School of Medicine, the world’s expert on Marfan syndrome and aortic aneurysm syndromes. Hal will take us on a fascinating journey starting with his discovery of the first human mutation in the Marfan gene, to developing an animal model and drug treatment for patients, finally to advocacy and community building. This will be contrasted by a powerful patient perspective on her genetic diagnosis of Loeys-Dietz Syndrome. The dinner event has a cost of $50 per person.

Saturday, June 17th features two free, concurrent events: a workshop for healthcare and related professionals, and a conference for families with rare diseases. In workshop-style panel discussions, we will explore challenges and ideas revolving around genetic service models in a large and rural state like Montana. There also will be “genetics 101” presentations by nationally recognized experts for those who would like to learn the basics of a genetics evaluation and testing. Representation from a wide range of community resources will be available and families will have the opportunity to learn what’s new in the world of medical genetics.

The symposium concludes with a screening of the powerful documentary Unseen – How We’re Failing Parent Caregivers & Why It Matters (trailer: https://caregiverdoc.com/) (A portion of this movie was supported by the Montana State Team‘s Year 6 project funds)