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Our Stories

    Home Our Stories

    Ryan

    Connecticut, USA
    Our personal journey began back in 2002 when our son Ryan, who had been developing normally until his first birthday, began struggling with with episodic bouts of muscle weakness, paroxysmal torticoll...

    Thea

    California, USA
    Meet Thea. Thea is three years old. Starting at about eighteen months, Thea seemed different than most children. She was less active and wasn’t reaching normal milestones. She had frequent period...

    Sammy

    Texas, USA
    Sammy is a friendly and joyful boy who never met a stranger. His passion is football and could basically tell you about any player on any college or NFL team. He is a senior in high school and the fo...

    Edoardo

    Italy, Europe
    Edoardo is 3 1/2 years old. Before being diagnosed with Tango2 disease, he had three severe episodes of rhabdomyolysis (at 13, 27 and 28 months old) with cognitive and motor impairment. Since he wa...

    Carlotta

    Italy, Europe
    Carlotta is 2 years old and is Edoardo’s younger sister. She was diagnosed with Tango2 when she was 1 year old. So far she has no evident symptoms. Carlotta started crawling at 8 months and walk...

    Bria

    New Glasgow, NS Canada
    This is Bria. For the longest time we had no idea what caused Bria's 'episodes', the first of which occured at the age of 4 months. We had spent the subsequent months/years battling back from that. Br...

    Eleanor

    Texas, USA
    Eleanor was born and lots of pink was brought into our home. She appeared to be healthy, happy, and typical as she approached 6 months, but being the third child what we were expecting wasn’t happe...

    Liam

    Delft, Netherlands
    Liam is a three-year old boy diagnosed with Tango2 after a long search of studies and tests.When Liam was one-year old he had his first "attack". He had no control over his muscles and was unresponsiv...

    Mátyás

    Budapest, Hungary
    Our little boy, Mátyás was born in Hungary on March 26, 2014. We waited a long time for him because hypothyreosis and insulin resistance had to be treated prior to becoming pregnant. My pregnan...

    Cesar

    Washington, USA
    This handsome young man is Cesar. He is 17 years young and he is one of the most loving, funny, caring guys you'll meet. Cesar was diagnosed with Tango2 on April 14, 2017....

    Cohen

    Texas, USA
    Cohen is 11. We finally found out he had Tango2 about 3 years ago after many years traveling all over the US visiting different specialists. He presented at 15 months when he began having atonic seizu...

    Harrison W

    Newcastle, Australia
    Harrison is the first child born to Caitlin and Kyle on April 21, 2017. Caitlin had Gestational Diabetes during pregnancy, and Harrison had two-vessel cord but otherwise an unremarkable pregnancy and...

    Danny

    Washington, USA
    Meet Danny Messerschmidt! He was born on October 29, 2014. He has two siblings also affected by TANGO2 related mitochondrial disease. His older brother Jackson passed away in 2015, and his younger sis...

    McKenna

    Washington, USA
    Meet McKenna Messerschmidt. She was born on 4/28/2016. She has two older brothers also affected by this disease- Jackson who passed away in 2015, and Danny who is 3 years old. There were no concerns b...

    Brianna

    Adelaide Austraila
    Meet Miss Brianna, who is 15 years old. We have only just recently (May 2018) gotten our Tango2 diagnosis. Brianna developed normally until 6 months of age - her skull was not growing properly and she...

    Olivia Grace

    Pennsylvania, USA
    Olivia Grace is 14 months old and was diagnosed at about 4 weeks old. While in-utero, genetic testing was done to test for any potential abnormalities. Testing came back positive for DiGeorge Syndrom...

    Katie

    New York, USA
    Meet our daughter Katie. When you look at Katie you see a typical 14 year old girl, and in some ways she is. She loves music, watching YouTube videos, swimming and just hanging out with family and f...

    Olivia M

    Victoria, B.C. Canada
    Olivia is our first daughter, she was diagnosed with tango 2 gene deletion at 7 months old after a metabolic crisis. Since then we have been by her side in the hospital. She is full of life, happy, an...

    Mohammed

    Saudi Arabia
    Mohammed is 14 years old and lives with his parents and five siblings in Saudi Arabia. His brother Zuhair is also affected by TANGO2 and his twin brother passed away at the age of 8 in 2012. ...

    Zuhair

    Saudi Arabia
    Zuhair is 9 years old and lives with his parents and five siblings in Saudi Arabia. His older brother Mohammed is also affected by TANGO2 and he had a brother who passed away at the age of 8 in 2012. ...

    Mikey

    USA
    Mikey is two years old, he has a twin sister and baby sister. He was typical toddler but he hadn't started walking but was crawling. After his second birthday, he was slowly losing his motor skills an...

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    Our Mission

    Our mission is to lead the way in finding a cure for TANGO2 related disease. We will do 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.

    Recent Posts

    • Teaming up with Solace Nutrition to help increase the quality of life for those with TANGO2 Disease

      December 1, 2020 | Uncategorized

    • Meet Agathe De Miniac, Author of ‘Tango2’

      November 11, 2020 | Uncategorized

    • RARE DISEASE CONNECTION TANGO2 PODCAST: Everything to know about TANGO2, from the experts

      October 7, 2020 | Uncategorized

    • FRIENDS & FAMILY RALLY FOR RYAN

      September 21, 2020 | Uncategorized

    • Chan Zuckerberg Initiative Grant Accelerates TANGO2 Research Foundation’s Funding and Hiring

      August 12, 2020 | Uncategorized

    Contact Us

    TANGO2 Research Foundation
    300 Plaza Middlesex
    Middletown, CT 06457

    info@tango2research.org

    Copyright 2018 - TANGO2 Research Foundation Incorporated | All Rights Reserved
    • About TANGO2
      • Symptoms
      • Early Signs of TANGO2
    • For Families
      • New Diagnosis
      • TANGO2 Study Now Underway
      • Our Stories
      • TANGO2 Conference – Houston 2019
      • Family Resources
      • Sammy’s Angels
      • Submit Your Story
    • Get Involved
      • Volunteer
      • Ways to Give
      • Fundraising Ideas
      • Apply For Grants (Researchers)
    • Research
    • About Us
      • Our Mission & History
      • Our Leadership
      • Scientific Advisory Board
      • Blog
      • Committees – CALL FOR VOLUNTEERS
      • Press Kit
    TANGO2 Research Foundation