This article first appeared in The Information Point newsletter Our World in 2014 when the centronuclear and myotubular myopathy community supported Rare Disease Day in a big way, showing their support on social media and by wearing blue and denim.
Erin Ward told the Information Point: ‘This year for Rare Disease Day, we encouraged our family and friends to again ‘Wear Jeans for Rare Genes’ to help raise awareness of rare diseases. We are so proud of our Will for living bravely with MTM everyday, especially on rare disease day this year, February 28th, as he turned 13. In our photo Mark and I are also wearing our MTM awareness shirts from our zazzle store for the US conference’.
Maggie Mae told the Information Point: ‘Our son Lincoln had a GI appt on Rare Disease Day so we made tshirts and proudly wore them out and about. He just turned three months old.’
And Melanie and Daniel Whiston, founders of Where There’s a Will There’s a Cure ran a Facebook event to encourage people to show support for people with rare diseases and to wear blue to raise awareness for myotubular myopathy.