Blog

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 2016Read more

The TANGO2 Research Foundation (T2RF) is seeking a dynamic leader to serve as the Research Engagement Director. This is an exciting time to join our foundation to help create and cultivate an organization that makes a real difference and transforms the lives of patients living with TANGO2 disease, a rare disease discovered in 2016. TheRead more

Here’s What You Need to Know About Our June Conference… The registration deadline is May 15th for the 2nd TANGO2 Family Conference June 26-28, 2022, in Orlando, Florida! You won’t want to miss the two and a half-day event, hosted by the TANGO2 Research Foundation. Our conference is designed to bring together the TANGO2 diseaseRead more

With great excitement we share that the Chan Zuckerberg Initiative (CZI) recently awarded the TANGO2 Research Foundation an additional $150,000 in funds to continue our work to find treatments and a cure. With this funding also comes  the opportunity to continue with the Rare As One Network for another year. We graciously thank CZI forRead more

Rare definition: adjective, seldom occurring or found. When considering that there are less than 200 individuals world-wide that have been medically diagnosed with TANGO2 disease, it might feel like we accurately fall within this definition. However, TANGO2 disease is one among 7,000 rare diseases globally. In fact, over 300 million people are impacted by rareRead more

We are pleased to introduce David Longman as our newest board member! Read below to learn how he connected with our community. What is your involvement with the TANGO2 Research Foundation? I am a member of Research and Outreach Committees, a Regional Coordinator and, most recently became a board member. How long have you beenRead more

In November, the East Hampton community came together for Ryan Morris at the third Shine a Light on TANGO2 banquet. This year’s event raised $40,000 bringing the total raised for this event to $113,000 since it was first held in 2018. “I am proud and humbled by the generosity of the East Hampton community,” KashaRead more

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