TANGO2 Research Foundation
300 Plaza Middlesex
Middletown, CT 06457
Our Stories
Ryan
Connecticut, USAOur 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, USAOur 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, USASammy 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, EuropeEdoardo 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, EuropeCarlotta 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 CanadaThis 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, USAEleanor 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, NetherlandsLiam 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, USAThis 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, USACohen 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, AustraliaHarrison 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, USAMeet 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, USAMcKenna 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 AustrailaMeet 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, USAOlivia 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, USAMeet 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. CanadaOlivia 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 ArabiaMohammed 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 ArabiaZuhair 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
USAMikey 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
PolandOur 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, AustraliaAnnie 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, AustraliaOur 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, USANusaiba 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, USAAislynn 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 KingdomEven 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 KingdomSebby, 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, USAHarley 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
SpainNora 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...
Recent Posts
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Things to Know for the Upcoming Family Conference
April 28, 2022 | Uncategorized
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Chan Zuckerberg Initiative Awards TANGO2 Research Foundation $150,000
February 28, 2022 | Uncategorized
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This Monday, February 28th is Rare Disease Day
February 24, 2022 | Uncategorized
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Meet Our Newest Board Member
January 18, 2022 | Uncategorized