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MIDDLETOWN, Conn. (August 12, 2020) –  Within six months of receiving funding from the Chan Zuckerberg Initiative (CZI), the TANGO2 Research Foundation (T2RF) is proud to announce funding of five new research projects and the hiring of their first Executive Director to accelerate work in finding treatments and a cure for a rare genetic disease called TANGO2.

The international group of researchers represent seven different institutions and four countries – including the United States, Germany, Canada and France. These projects will have a duration of one year and the results will be presented at the next international patient convening, tentatively scheduled for mid-2021.

“We are thankful to CZI for enabling us to accelerate and expand our first round of funding. Without their support, we would not have been able to fund as many high-quality, international projects this early in our life cycle. With a disease such as TANGO2, that was only discovered four years ago, these early projects are key to furthering our basic understanding of the disease and setting the stage for future research,” said Mike Morris, Co-Founder of the TANGO2 Research Foundation. “Together, with the continued efforts of our committed board of directors, parents, volunteers and recently hired Executive Director, Ann Geffen, we’re going to do what’s necessary to keep progress against TANGO2 disease moving forward and find answers to the questions that will help children and young adults affected by this disorder.”

“The TANGO2 Research Foundation is poised to build on tremendous momentum since becoming a part of the CZI Rare As One Network earlier this year,” says Geffen. “I look forward to working alongside the board of directors and families to pave the way for cutting edge research projects in hopes of making a positive difference for children living with such a rare disease.”

Geffen joins the Foundation from an extensive and all-encompassing nonprofit background. Previously, she worked for several national nonprofit organizations including March of Dimes, American Heart Association and American Lung Association where she managed campaigns raising over $6 million annually and spearheading community efforts for thousands of members in Central Florida. Geffen holds a Juris Doctor degree with the Thomas Jefferson School of Law and a Master of Arts degree in Strategic Public Relations from the University of Southern California.


About the Chan Zuckerberg Initiative

Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, visit

About the TANGO2 Research Foundation

The TANGO2 Research Foundation, a patient-led rare disease organization, was founded in 2017. Their mission is to lead the way in finding a cure for TANGO2 related disease by helping to fund, coordinate and guide scientific research. The TANGO2 Research Foundation also offers family outreach and support in addition to raising general awareness about this serious disease. They are a registered nonprofit 501(c)(3) organization. For more information, visit

About TANGO2 Disease

This rare genetic disorder was only discovered in 2016. Symptoms first appear as children reach about 12 months. These children face many health challenges including life-threatening arrhythmias, rhabdomyolysis and metabolic crises. In addition, many suffer from intellectual disabilities and developmental delays, loss of motor and cognitive skills, muscle weakness, seizures, and more. TANGO2 disease is progressive and there is currently no treatment or cure.