The initial diagnosis of TANGO2-related disorder in a loved one brings a family a variety of emotions from shock, to fear to uncertainty. Being a newly discovered rare disease, families of those recently diagnosed can struggle with finding information, resources and community.
When Tyson and Veronica’s daughter, Thea, was diagnosed at age 2 in 2016 with TANGO2-related disorder, they weren’t sure where to turn for help. The disorder was not well known and they were told that they would have to be their own advocates for care and information. Their genetic counselor recommended that they use social media to try to find other families affected by the disease. Veronica created a Facebook group and slowly found more and more families to connect with and share information.
The Morris family joined the group in 2017. Their 15-year old son Ryan had been recently diagnosed. The Morris family created and began the TANGO2 Research Foundation with the goal of funding research for TANGO2 disease. They organized a board of parents and formed a scientific advisory board of doctors and researchers connected with patients living with TANGO2-related disorder.
Just a short few years later, the TANGO2 Research Foundation is leading the way in finding a cure for TANGO2-related disease. We are doing 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.
TANGO2 disease is so rare that fewer than 150 cases have been reported worldwide, primarily in young children. The disease, which results from a variation in the TANGO2 gene, can cause seizures that result in brain damage as well as life-threatening irregular heart rates. The disease has proved fatal by age 9 in about half the children diagnosed.
NOW is the time to shine a light on this rare disease and raise awareness and funding for treatment and a cure.
And YOU can help!
Our 2nd annual Shine a Light on TANGO2 virtual fundraiser is well underway with a goal to raise $100,000 for critical research on this rare disease. Fundraising goes until the end of June and participants have raised just over $71,000 with two weeks to reach our goal.
YOU can help us reach the finish line! Visit shinealightontango2.com to register as an individual or team. Once registered, you will have access to a personalized fundraising webpage to modify and share your reasons to support awareness and funding of TANGO2 research. Share your own unique fundraising link on social media platforms and emails to help raise funds, or use some of our fundraising ideas to get creative and host your own local and community fundraisers.
Reaching our goal of $100,000 will mean another round of research grants that will further our mission to help our children and young adults have the healthiest and brightest future possible. And we can only do it with your support.
Are you ready to shine a light on TANGO2 disease with us? Please go to: www.shinealightontango2.com today to sign up or donate to one of our teams.