The very first TANGO2 Family Conference is now in the history books! Over 110 people – 22 families from 6 countries, almost 20 doctors and researchers and other professionals gathered in Houston last week to present research (and other topics related to TANGO2) and learn from one another.
The conference was funded in large part by a grant from PCORI (Patient Centered Outcomes Research Institute) and led by Dr. Seema Lalani, Associate Professor – Baylor College of Medicine and TANGO2 Research Foundation board member. A Conference Planning Committee, comprised of members of the parent community and the TANGO2 Research Foundation, assisted Dr. Lalani in what resulted in a truly amazing conference for all those involved.
For many families and children affected by TANGO2 disease, it was the first time they had an opportunity to meet with and interact with other affected families. The friendships made and stories shared help set the stage for working together to find treatments and therapies for this disease.
We would like to thank the following speakers for their outstanding presentations:
Dr. Seema Lalani – Welcome Address & The Genetics of TANGO2 Disorder
Brownie Shott – Keynote Address
Dr. Christina Miyake – Summary of Natural History and the Heart and TANGO2 Challenges
Denise Neu – What is Patient Centered Outcomes Research and PCOR/CER Workshop
Dr. Felix Distelmaier – Cell Physiological Consequences of TANGO2 Deficiency
Dr. Kim Houk – The Neurogenetics of TANGO2 Disorder
Dr. Claudia Soler – Keeping Up With the Metabolic Demands in Children with TANGO2 Crises
Kasha & Mike Morris – Role of the TANGO2 Research Foundation
Dr. Sebastian Montealegre – French Cohort of Patients with TANGO2 Disorder
Dr. Chaya Murali and Hadley Smith – Promoting Engagement of Families in Research for Finding Better Treatment for TANGO2-Related Disorder
Dr. Lindsey Burrage – Tango2 Mouse Model
A very special thanks also goes to the organizers and volunteers who made the Kid’s Camp the incredible experience it was for the children while allowing parents to focus on the conference itself. Over 20 volunteers, led by Laura and Marcie Lopez, cared for and entertained TANGO2-affected children and their siblings over the course of the two-day conference. THANK YOU!!
We would also like to express our sincere thanks to Dr. Mahshid Azamian, who managed the research clinic as well as many other details around the conference!
We will be featuring more specifics and stories from the conference in the coming weeks on this blog, but wanted to share first impressions and thanks first!