Myo the traveling turtle

This article first appeared in a 2015 issue issue of the The Information Point newsletter Our World, when theĀ the MTM-CNM Family Connection told us about Myo the Traveling Turtle.

Myo the Traveling Turtle at the MTM-CNM Family Conference.

Myo the Traveling Turtle was hatched at the 2015 MTM-CNM US Family Conference. Myo’s mission is to travel the world, visiting members of the centronuclear and myotubular myopathy community, to help us all stay connected.

The turtle is one of the oldest living animals walking the earth today. The oldest fossils of turtles are dated at over 200 million years old, so Myo is a symbol of longevity, endurance, persistence and the continuation of life (sometimes against incredible odds).

Earlier this year, the MTM-CNM Family Connection asked the CNM/MTM community to choose from a list of potential names and the name Myo was chosen – as in the word myopathy, which is derived from the Greek language, with ‘myo’ meaning muscle and ‘pathy’ meaning disease. Together the words mean muscle disease. Coincidentally, the shape of a turtle is used as a mnemonic (a learning technique that aids information retention in the human memory by translating information into a form that the brain can retain better), for the structure of the biochemical compound myoinositol, which is part of the PI(3)P lipids that play an important role in the structure of the cell membrane and signaling of muscle contraction.

Myo at Wrigley Field with the Bushey family.

Since the family conference, Myo has been on a whirlwind adventure visiting members of the CNM/MTM community where they live and raising awareness of CNM/MTM. Before leaving Chicago, Myo attended a Cubs game at Wrigley Field with the Bushey family, then traveled to Massachusetts to watch a Red Sox game at Fenway Park with the Ward family. In September Myo attended the Global Genes RARE Patient Advocacy Summit at Huntington Beach and also visited the Manny family in Rancho Cucamonga, both in California, before heading on to San Francisco to see the work being done by the biotechnology company Audentes Therapeutics, who are developing a gene therapy treatment for X-Linked myotubular myopathy – Myo also got to see the paintings that hang in the office painted by Andy Villon who has MTM.

A ten hour flight from California saw Myo attend the 20th International Congress of the World Muscle Society with many experts in neuromuscular disease and he also got to go sightseeing around Brighton. Back home in the US Myo visited the offices of Google, Facebook and LinkedIn, before traveling to see the Wood family in New York, where he visited the Bronx zoo and Botanical Gardens, visited the heart of the Red Apple, took a trip on a ferry to see the Statue of Liberty and attended Reid Wood’s Teenage Mutant Ninja Turtle-themed birthday party.

Further information

Where will Myo show up next? To keep up to date with Myo’s travels and see where he goes next, visit the MTM-CNM Family Connection website or Myo’s Facebook page.

* MTM-CNM Family Connection website
* Myo the turtle on Facebook

If you would like Myo to visit you email info@mtm-cnm.org.

 

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