Myo the traveling turtle: 2017

During 2017 Myo the traveling turtle continued his adventures. Myo’s mission is to travel the world, visiting members of the centronuclear and myotubular myopathy community, bringing smiles and helping the community stay connected.

In April Myo traveled to Marrakesh, South Africa with Marie Wood – they traveled via London, where they met up with Anne and Mel from the Myotubular Trust.

In June he visited the Garland family in Indiana where he attended a GI appointment and also Pirate day at the school where Reese who has myotubular myopathy attends – he also got to see Reese be awarded a certificate of achievement on his last day at kindergarten.

July saw Myo travel to Tennessee for the MTM-CNM Family Conference, where he got to meet and spend time with many MTM-CNM families, friends, and professionals and on arriving in Nashville got to enjoy some live music at a honky tonk (leaving with a memento – a guitar pick with a turtle on it) and at the Grand Ole Opry too.

In September Myo attend the Global Genes Rare Patient Advocacy Summit in Irvine, California. Highlights included meeting Bruce Bloom, CEO of Cures Within Reach, an organisation who are helping to work toward using a repurposed drug to treat MTM and watching the film ‘We Carry Kevan’ (Myo got to meet Kevan too).

Further information

Where will Myo show up next? If you would like Myo to visit you email info@mtm-cnm.orgTo 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.

You can learn more about We Carry Kevan and the Global Genes Rare Patient Advocacy Summit below.

You can read more about Myo’s travels below.

 

 

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