Blog

Recently, Kasha and Mike Morris, Founders of the TANGO2 Research Foundation met with other Chan Zuckerberg Initiative (CZI) Rare As One Project patient-led organizations from the Northeast area. The gathering was a wonderful opportunity to get to know the other rare disease organizations better, share common challenges and learn from one another’s successes.  Our FoundationRead more

We are pleased to introduce Dr. Michael Sacher as our newest board member! Read below to learn how he connected with our community. Also, catch Dr. Sacher as one of our featured speaker during the TANGO2 Research Symposium on November 6th!   Please tell us your role at the TANGO2 Research Foundation? I am aRead more

During the Summer, the TANGO2 Research Foundation’s leadership team met with the Broad Institute of MIT (Massachusetts Institute of Technology) and Harvard.  Broad is an independent research institution dedicated to accelerating the pace at which the world conquers disease. They completed a  TANGO2 disease prevalence study by curating, classifying and analyzing the various TANGO2 diseaseRead more

TANGO2 disorder was first described in 2016, and based on estimated carrier frequencies of those pathogenic variants associated with TANGO2 disorder, the vast majority of patients with this disease remain undiagnosed. Unfortunately, rarely is a diagnosis made before a child’s first metabolic crisis. As these crises can be fatal, it is imperative that children withRead more

On June 26th, our Foundation had a successful virtual event celebrating on TANGO2 community. We celebrated our amazing team captains, participants and donors for surpassing our fundraising goal. We also heard from one of our research grantees, Dr. Michael Sacher, and launched our CoRDS TANGO2 patient registry. Click to watch the recording here and view allRead more

The families of our TANGO2 warriors have been an immense source of support and outreach for their warriors and our cause. Just this week, David Longman organized a POKER FOR TANGO2 fundraising event to honor his son’s, Erling, journey living with TANGO2 disease as part of the Shine a Light on TANGO2 campaign. Around 32Read more

We are pleased to announce the transition of leadership for our Fundraising Committee. Our outgoing chair, Kara Dort, has accepted the role of Board Treasurer after successfully leading the fundraising committee and campaign to exceed our goal. Take a moment and meet Sam, our new Fundraising Committee Chair. Get to know Sam and read why sheRead more

This month, the community of East Hampton, Connecticut held two fundraising events to support Team Ryan’s Shine a Light on TANGO2 campaign! The first event was at Po’s Rice and Spice in the historic district of East Hampton. Guests enjoyed delicious and innovative Thai dishes while supporting Ryan, an East Hampton native, who was bornRead more

If you were on our Shine a Light on TANGO2 kickoff event back in February, you met Lindsey and Brad Messerschmidt! Lindsey and Brad are parents to three children diagnosed with TANGO2 disease. They live in Spokane, Washington. Their first son Jackson passed away at the age of three and at the time, he did not haveRead more

We are happy to highlight Team Oliver’s Awesome Advocates today! Oliver was diagnosed with TANGO2 in 2018 when he was 13. Oliver’s parents had already been searching for an answer to his ataxia, episodes and unexplained fatigue for more than 12 years at that point. While they were relieved to have a diagnosis, the poorRead more