Myo the traveling turtle: 2016

During 2016 Myo the traveling turtle continued his travels around the globe. Myo’s mission is to travel the world, visiting members of the centronuclear and myotubular myopathy community, bringing smiles and helping the CNM/MTM community stay connected.

Myo and Nathan

In 2016 Myo continued his adventures, which included a weekend at Picacho Peak State Park in Arizona with the McDermott family, a hiking trip with the Mashinchi family along the Pacific Coast trail in Oregan and a visit to see Grayson, who was in need of some smiles, at the Children’s Medical Center in Dallas.

Myo and Grayson.

Myo met researchers from the University of Florida, Dr. Barbara Smith and Terry Sexton) learning about the Respiratory Muscle Function Study for XLMTM, in California he met the Serafano Family and in Texas he met with the Swed family.

In May Myo travelled to Germany where he did a little sightseeing before attending the European Family Conference in Frankfurt, held by ZNM Zusammen stark e.V. and the Myotubular Trust. While there he also took a little side trip with Tristen Moors from Audentes to visit Dr Muller-Felber in Munich, at one of the clinical sites working towards gene therapy for MTM and where he also got to meet CNM/MTM community members Marian and her son Jeno who has myotubular myopathy.  

 

The Crane family, Northbrook, Illinois. USA

Myo also met the Crane family in Illinois. Myo would have loved to have met Scott in person but spent some wonderful time with Scott’s family, who told Myo all about him and shared with Myo many of Scott’s favorite things.

Together, Myo and Scott’s family laughed and cried and SMILED (just as Scott would have wanted). Scott loved food, was compassionate, funny, witty, clever, hard working, had an outgoing personality, was a computer wiz, and very much enjoyed talking to all his myotubular and centronuclear myopathy Facebook friends. He had a positive attitude and everyone enjoyed being with him and talking to him – both near and far. Scott’s strong spirit is watching over all of you.
The Crane family. The Crane family. The Crane family.

Global Genes Patient Advocacy Summit

 

Myo, our MTM-CNM Traveling Turtle, also made the trip to the 2016 Global Genes Patient Advocacy Summit in Huntington Beach, California and made his rounds at the summit, meeting patients, family members, researchers, pharma industry and government agency leaders, where he had an opportunity to share with other patient groups how he travels around the world with the goal of connecting our community and spreading awareness of MTM and CNM. Myo was happy to meet some new friends and also did some advocacy work, supporting the #CURESNOW campaign through social media.
 Global Genes Patient Advocacy Summit.
Global Genes Patient Advocacy Summit.  Global Genes Patient Advocacy Summit.

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 MTM-CNM traveling turtle on Facebook

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

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