Rare Disease Day 2013

This article first appeared in The Information Point newsletter Our World in 2013. This year marked the sixth Rare Disease Day with 71 countries from around the world helping to raise public and political awareness of the issues faced by the rare disease community and to. The Ward and Whiston families wrote about what they did to mark Rare Disease Day 2013.

The Ward family: Erin, Mark and Will

Rare Disease Day this year took place on 28 February which also happened to be Will’s 12th birthday. Wanting to raise funds for the 2013 US MTM-CNM Family Conference, we approached Will’s sixth grade teachers, along with school administration, about hosting an ‘I Wear Jeans For Rare Jeans Day’.

Often schools will host ‘jeans days’ as a day when school staff are allowed to wear jeans if they give a donation for a certain cause they are raising funds for in a given month and Will’s amazing school team happily agreed to our request.

Along with asking Will’s school staff to participate, we also invited family and friends to join in as well. Altogether, we were able to raise $752.00 on Rare Disease Day and in honor of Will’s 12th Birthday for the 2013 US MTM-CNM Family Conference and we would like to thank everyone who participated in making our ‘I Wear Jeans for Rare Genes’ a success.

For further information about hosting a ‘Wear Jeans for Genes’ fundraiser at your school or workplace for the US Family Conference contact Mark and Erin. If you would like to make a direct donation visit the conference Firstgiving donations page.

The Whiston family: Melanie, Daniel, Will and Juliet

Our foundation for myotublar myopathy, Where There’s A Will There’s A Cure, held its first annual awareness event ‘Blue for the Cure – Rare Disease Day 2013’. We asked our friends, family and supporters to wear blue and post pictures on our facebook event page to help raise awareness for Rare Disease Day and myotubular myopathy.

The event was a huge success and it tuned out to be a really fun day. We are thrilled with the support we received and are excited about Blue for the Cure – Rare Disease Day 2014.

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