ROAD MAP
Research is at the epicenter of finding a cure.
We envision our foundation as the vehicle committed to driving the research forward; funding grants, enhancing communication and coordinating efforts among those invested in conquering TANGO2 deficiency disorder.
This year, we invested $100,000 in TDD research around the world bringing the total investment to almost $860,000 since 2018.
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RESEARCH PRIORITIES:
Families attending the 2022 TANGO2 Family Conference responded to our survey and expressed that these topics were the most important to them. This now serves as a guide to our research road map.
- Managing & understanding life-threatening symptoms of TANGO2-related deficiency disorder
- Improving quality of life, independence and preventing loss of function
- Studying cellular response to medications
- Beginning efficacy clinical trials discovering effective ways to avoid crises & rhabdomyolysis
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“I am hopeful that the combined efforts from our lab & across the TANGO2 research community will be able to translate our research findings into care for our patients in the clinic.”
Josh Meisner MD, PhD