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Digital public sector news, research & engagement

Jeans for Genes - Changing the world for children with genetic disorders

Is your organisation fundraising for Jeans for Genes Day on 1st October?

If so, please let have pictures from the day! We are supporting Jeans for Genes day this year and will be posting the best pictures from public sector organisation fund raising days on our news site throughout October.

Jeans for Genes is the original and best Dress-Down Day - wear your jeans to work and donate £2 to the charity that is quite literally changing the world for children with genetic disorders.

You can learn more on the charity's website, but I can assure you that this fundraising has an enormous, positive impact on the lives of children affected by rare genetic disorders and their families.

My own son, Charlie, has a life-threatening and incurable neuromuscular disease, Congenital Myasthenic Syndrome (CMS). Jeans for Genes has supported our fledgling parent support network to bring families affected by this genetic condition together - for the first time - both in the virtual and the real world.

The difference this makes to these families is immeasurable: "This annual meeting is invaluable and needs to continue if we are to help each other and ensure that those professionals who support us locally, and may only meet one Myasthenic in their careers, have the best information. We can be proactive and help our doctors and health professionals provide the best management of Myasthenic symptoms as long as we keep in touch with each other," Kerry Webster, Cardiff. Mother of two boys with CMS.

You can read about Tracey Cockburn's little girl, Ellie, and her fight for life against CMS here Or my own son's successful and hard fought for start at school this month here.

Jeans for Genes supports families, children and vital research into their condition. By signing up to Jeans for Genes Day on 1st October you will be helping to make a real difference - and having some fun along the way!

Sign up now for Jeans for Genes Day and don't forget to send us your pictures for to me here.

Kind regards,

Helen Olsen (Bedford)
Managing Editor, Informed Communications Ltd