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Every year, the TANGO2 community rallies together to participate in our virtual campaign, Shine a Light on TANGO2. I participate because I want to make a difference in the lives of children and young adults living with TANGO2 disease.

TANGO2 disease has touched my family affecting two of my cousins, Hudson and Cole. Our family was unaware of this genetic disease until Hudson suddenly passed away at only 5 1/2 months old. Finally, through genetic testing, it was discovered that Hudson (and now his baby brother, Cole) have the TANGO2 gene variant.

Cole was diagnosed with TANGO2 just a few months prior to his birth through in-utero genetic testing. Cole is now 10 months old and is just so precious. Cole's parents must monitor him very closely for any signs of metabolic crisis. Cole has been hospitalized several times since birth due to TANGO2.

TANGO2 Disease is a genetic disease that affects children and young adults causing muscle weakness, muscle breakdown, developmental delays, seizures, metabolic crisis, and life-threatening cardiac arrhythmias. Metabolic crisis is life threatening and is usually precipitated by dehydration, fasting, or viral infection. Many TANGO2 patients have a long road to getting a correct diagnosis. Early diagnosis is critical in managing their life-threatening symptoms.

Please join me as I shine a light on TANGO2. Please consider making a donation to the TANGO2 Research Foundation, so that we can fund as many research projects as possible to study TANGO2 disease.

The TANGO2 Research Foundation is a 501(c)(3) whose mission is to fund and coordinate scientific research to increase studies that will lead to managing life-threatening symptoms for those living with TANGO2 disease.