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TANGO2 Conference – Houston 2019

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Program

The very first TANGO2 Family Conference was held on June 19th – 20th and was a huge success in every way. 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.

Speaker Presentations

1. Keynote Address

Brownie Shott – Rare Disease Parent

VIDEO

2. The Faces of TANGO2

Kasha Morris – Rare Disease Parent

VIDEO

3. Summary of Natural History Study of TANGO2 disorder

Christina Miyake, MD – Baylor College of Medicine

SLIDE DECK | VIDEO (PENDING)

4. What is Patient Centered Outcomes Research?

Denese Neu – PCORI Engagement Officer

SLIDE DECK | VIDEO

5. The Genetics of TANGO2 disorder

Seema Lalani, MD – Clinical Geneticist, Baylor College of Medicine

SLIDE DECK | VIDEO

6. Cell Physiological Consequences of TANGO2 Deficiency

Felix Distelmaier, MD – Pediatric Neurologist, Heinrich-Heine University Düsseldorf, Germany

VIDEO (PENDING)

7. Facilitating Opportunities for PCOR/CER for Children with TANGO2 Disorder Workshop I

Denese Neu – PCORI Engagement Officer

SLIDE DECK

8. Variability in Symptoms- The Neurogenetics of TANGO2 Disorder

Kim Houck, MD – Pediatric Neurologist, Baylor College of Medicine

SLIDE DECK | VIDEO PENDING

9. Keeping Up With the Metabolic Demands in Children with TANGO2 Crises

Claudia Soler, MD – Metabolic physician, Baylor College of Medicine

SLIDE DECK | VIDEO (PENDING)

10. TANGO2 Research Foundation - A parental group dedicated to supporting research to save lives

Mike and Kasha Morris – Co-founders, Rare Disease Parents

VIDEO

11. French Cohort of Patients with TANGO2 Disorder

Sebastian Montealegre, PhD – IMAGINE Institute, Paris, France

PENDING

12. Promoting Engagement of Families in Research for Finding Better Treatment for TANGO2-Related Disorder

Chaya Murali, MD – Clinical Geneticist, Baylor College of Medicine

Hadley Smith, MPSA, PhD – Health Economics, Baylor College of Medicine

SLIDE DECK | VIDEO PENDING

13. Heart and TANGO2-Challenges in Treating Arrhythmias to Save Lives

Christina Miyake, MD – Baylor College of Medicine

SLIDE DECK | VIDEO (PENDING)

14. TANGO2 Mouse Model

Lindsay Burrage, MD, PhD – Metabolic physician, Baylor College of Medicine

SLIDE DECK | VIDEO (PENDING)

Our Mission

Our mission is to lead the way in finding a cure for TANGO2 related disease. We will do this by helping to fund, coordinate and guide scientific research that leads to a better understanding of how TANGO2 mutations affect people at the most basic cellular and biochemical pathway levels.