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Newsletter for the centronuclear and myotubular myopathy community

Issue 2/2020



An announcement from Toni: founder of The Information Point and The Big Sunflower Project

After almost 20 years, Toni Abram, founder of The Information Point and The Big Sunflower Project, will be stepping down from her roles at the end of the year. Below, in this final issue of Our World, she writes about her work over the last 20 years and shares some of her favourite photos.

Read more: Announcement

Sunflower grown in Sheffield.

The Big Sunflower Project

2020 was the 10th anniversary year of The Big Sunflower Project with over 290 people participating in the UK, the Netherlands, France, Germany, Poland, Sweden, Greece, the USA, Australia and the Philippines.

Read more: The Big Sunflower Project

Myotubular Trust logo.

UK patient update webinar

On 4 July 2020, the Myotubular Trust held a virtual coffee morning with some of the UK's leading neuromuscular experts. Learn more about the event in this issue of Our World.

Read more: UK patient update webinar

Patient Registry logo.

Patient Registry

Update on the Myotubular and Centronuclear Myopathy Patient Registry.

Read more: Patient Registry

A spotlight in HACD1-associated congenital myopathies

Dr Gemma Walmsley and Dr Rhiannon Morgan are currently researching HACD1-associated centronuclear myopathy at the University of Liverpool. In this issue of Our World they tell us about their work.

Read more: 
HACD1-associated congenital myopathies

Dynacure news: introducing Lori Gorski

Lori Gorski has recently joined the team at Dynacure, leading Patient Advocacy. In this issue of Our World she introduces herself and writes about the work currently being undertaken by Dynacure.

Read more: Introducing Lori Gorski

ActiMyo research survey

A research survey for patients living with a neuromuscular disease, their families and caregivers is currently seeking opinions, expectations and concerns regarding the use of a wearable device in clinical trials.

Read more: ActiMyo research survey 

14th memorial golf tournament for Jack

In October, after months of being postponed, the 14th memorial golf tournament for Jack took place in West Sussex. 

Read more: 14th memorial golf tournament for Jack

Marie and Paley.

Good news stories

2020 has been a difficult time for everyone, so all year the Information Point has been on the lookout for good news stories from the CNM/MTM community.

Read more: Good news stories




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