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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
    Our 7-year-old daughter Thea loves to swim and play tennis. She is very artistic and loves to make her own doll house furniture out of paper. She takes a few minutes to warm up, but once she does sh...

    Sammy

    Texas, USA
    Sammy loved to make friends and it didn't matter who you were! He never met a stranger! I swear his smile was permanently painted on his face. He had this huge joy even during difficult times. His fav...

    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
    McKenna is 5 years old and attends preschool. She is mainstreamed with typically developing children and also receives special education support including Speech, Occupational, and Physical Therapies....

    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 is such a loving little girl who is also a little spitfire. She may be non-verbal but she knows what she wants and knows how to get it. Her best friend is her big brother Riley. She absolute...

    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...

    Milena

    Poland
    Our little Princess, Milena, is always smiling, cute, smart, and caring. She loves travelling, playing her musical instruments for fun, jumping on the trampoline, playing in the playground and most of...

    Annie

    Victoria, Australia
    Annie is two years old and she radiates joy. She loves music, dancing, bubbles and feeling the wind on her face. Everything is such a wonder to her. It is such a pleasure to watch her discover the wo...

    Daniel W

    Western Australia, Australia
    Our 9-year-old son Daniel is the funniest lad you'll ever meet. So caring, kind and boisterous. He is beyond clever. He loves music and rocking out on a daily basis. He also loves swimming, the outdoo...

    Nusaiba

    Springfield, Virginia, USA
    Nusaiba is a very happy 5-year-old child who demands love and affection. She has no interest in toys or objects. She just loves to be around people. Sometimes she does like to pretend-play cooking wit...

    Aislynn Rae

    Ohio, USA
    Aislynn is 15 months old. We call her our little ray of sunshine because her middle name is Rae. She is so "rotten." We call her rotten because she was always getting in to everything before she got ...

    Otis

    Devon, United Kingdom
    Even in the womb (being a breach baby), Otis decided he was going to do things his own way. We had a normal start to life as a family, as normal as could be in a not so normal world full of lockdowns ...

    Sebby

    United Kingdom
    Sebby, our 10-year-old son, is a cheeky, happy, caring and empathetic young man. He loves swimming, unicorns, horse riding, all things farming, playing outside and going to school. He enjoys baking a...

    Harley Nova

    Washington State, USA
    Harley is a spunky 19-month-old little girl with a huge light to shine on everyone. She is very kind with lots of love & cuddles to give while always smiling & laughing. She loves to be outdoors play...

    Nora

    Spain
    Nora is a very brave four-year-old girl. She teaches us to live from day to day and to make the most of all her progress during the moments she spends with us and her 9-year-old older sister. Nora is...

    Sergio

    Querétaro México
    Sergio Alejandro is 10 years old; he is a very cheerful and very tender boy. He loves animals, he cares about others, he likes music, dancing, art, playing video games, archery, going to the beach (bu...

    Asha

    Melbourne, Australia
    Asha is a beautiful, kind and loving young woman with a wicked sense of humour. She is 26 years old. She loves her family and carers, her animals, babies and music, especially heavy rock. Asha has a p...

    Collin

    Indiana, USA
    Collin is a very happy teenager. He loves life and his people. Collin loves his family, music, cars, playing basketball, riding his bike, jumping on the trampoline, swimming, and cheering on the Ball ...

    Lilian

    Long Island, New York, USA
    Lillian loves dancing and playing with her sisters and cat. She is a sweet, loving, kind, and playful. She is always happy and smiling. She was meeting all her milestones except walking. When she...

    Marina

    Greece
    Marina is a happy 2-year-old girl. She likes to play with people more than playing with toys. She loves songs for children and cartoons. She always smiles. She also likes to be on move like being in t...

    Hanna

    Plymouth, Michigan, USA
    Hello TANGO2 families! Our 27-year-old daughter, Hanna, was diagnosed with TANGO2, in February 2022 and we would like to share our experiences in case you are interested in learning about our 27 year...

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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

    • 2022 TANGO2 Family Conference Recap

      July 14, 2022 | Uncategorized

    • Our Foundation’s Story on Shining a Light on TANGO2

      June 14, 2022 | Uncategorized

    • Our Foundation is Hiring a Research Engagement Director!

      May 23, 2022 | Uncategorized

    • Things to Know for the Upcoming Family Conference

      April 28, 2022 | Uncategorized

    • Chan Zuckerberg Initiative Awards TANGO2 Research Foundation $150,000

      February 28, 2022 | Uncategorized

    Contact Us

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    • 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
      • Sponsors
      • Committees – CALL FOR VOLUNTEERS
      • Press Kit
    TANGO2 Research Foundation