Blog

When a new disease such as TANGO2 is discovered, there is a lot to learn. Many of the physicians caring for children with TANGO2 have never seen or managed this disease. The best way to learn about a new disease is to gather as much information as possible. As parents living with children with TANGO2,Read more

On Wednesday, June 19th through Thursday June 20th, patients, families, doctors and other professionals will meet in Houston TX to discuss TANGO2 disease and how to best move forward with research around this rare and serious genetic disorder. The conference is made possible by a generous grant from the Patient-Centered Outcomes Research Institute (PCORI) awardedRead more

Thank you so much to Laura and Blake Moore of Tahoka TX for sharing their daughter Ellie’s story with Juanell Jones of the Lynn County News and helping raise awareness for TANGO2. This is a wonderful article that touches upon the experiences, challenges, uncertainties and hope of one family raising a child affected by TANGO2Read more

Two news outlets in British Columbia recently ran stories about Baby Olivia (McDonald), who was diagnosed with TANGO2 disease in July of this year. These two stories share the ongoing journey and struggles of Olivia and her parents, Chris and Gloria McDonald, as they and doctors battle this serious disease. Please take the time toRead more

Veronica, Thea’s Mom, has started a blog sharing her and her family’s TANGO2 journey – click here to go to Notes from a Rare Disease Mom From Veronica: “In 2017, my then 2 year old daughter was diagnosed with a rare disease called Tango2 disease. Since then, we have been searching for answers and treatments.Read more

A natural history is the single best avenue to study traits of TANGO2 and how these traits progress over time With so little currently known about TANGO2, the collective data in a natural history study provides a resource to physicians that can potentially help treat children in crisis today A natural history study can helpRead more

UPDATE 6/7/2018 – NOW ACCEPTING PATIENTSFamilies can contact Dr. Christina Miyake at cymiyake@bcm.edu for further information. We received word at this past Sunday’s TANGO2 Research Foundation board meeting that the Baylor IRB protocol for a TANGO2 Study has been approved! The official title of the IRB is Understanding the underlying mechanism of TANGO2 disease –Read more