Blog

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

This Rare Disease Day, the TANGO2 Research Foundation highlights “Living with a Unicorn” –  a blog by Gloria McDonald, Olivia’s mom. Gloria talks about Olivia, her diagnosis of TANGO2 disease, how their life changed, what they’ve learned along the way, and more. Gloria writes, “We hope that you will feel encouraged and inspired by Olivia’sRead more

In Spring of 2020, the TANGO2 Research Foundation granted Dr. Michael Sacher and Dr. Felix Distelmaier an award for their research proposal entitled Characterization Of Human TANGO2: From Biological Function To Therapeutic Strategies. Less than a year later, we are pleased to share that we already have research updates and progress. Dr. Sacher and his team have used fibroblastsRead more

Solace Nutrition has teamed up with the TANGO2 Research Foundation to help support our mission of leading the way in finding a cure for TANGO2 related disease.  Solace Nutrition seeks to develop medical nutritional products with a strong scientific background that target diseases which can be better managed through nutrition and thus promote quality ofRead more

Our foundation interviewed Agathe De Miniac for our blog this month. Agathe wrote a book about her family being shaken up by the arrival of three disabled children. We are pleased to share this interview in both English and French below. Click for more information or to purchase the book.   What are the names andRead more

We are pleased to share that Rare Disease Connection, a production of Aspect Health and raredisease.com, recently hosted a podcast with friends of our foundation! Sheena Byerly hosted Dr. Seema Lalani, Jayme Gilmore, and Lindsey Messerschmidt and featured their expertise and experiences with TANGO2 disease. TANGO2 disease has only been described in the last severalRead more

This month, friends and family of Ryan Morris held a successful fundraiser to honor his journey living with TANGO2 disease. Ryan’s aunts, uncles, cousins and friends rallied together and gathered donations to set up a booth at the first area Flea Market of the season.  Donations were collected from across eight different states that includedRead more