A Mummys View

Telling it like it is

DysNet – Bringing Together the Dysmelia Community

So, many of you who regularly read my blog will know that I am a disabled mummy and was born with hip displacyia or CDH as it was known then), so I have a lower limb abnormality you could say.

I am certainly up for supporting charitable causes and so far in my very small blogging life I have been involved in the #Blogitforbabies Save the Children campaign, the ONE Thrive campaign, I’ve held a Yummy Mummy fundraising event for CLIC Sargent and devised and launched #Blogging4Madeleine in support of finding Madeleine McCann.

I was recently contacted by the lovely Tania Tirraoro who told me about DysNet a new online community to support people with limb differences (otherwise known as Dysmelia) and with having a limb abnormality myself I was only too  happy to help.

The DysNet site went live on Monday 21st May and aims to provide up-to-date information, support and research for people with limb differences throughout the world.

I think this is a great tool, as I remember how my family felt when I was younger and they were coming to terms with my disability. They came across a wonderful charity called STEPS who provided and still continue to provide fabulous support to people with lower limb abnormalities. So, in the current digital age that we live in and with so many people turning to the world wide web for answers to their questions, the launch of a website like DysNet is fantastic in helping provide support to people who either have had Dysmelia for some time, or who are just experiencing it and want to find out more and have that same support that my family had all those years ago.

It is hoped that individuals will contribute to the online knowledge base to share expertise and resources that could benefit others that are in a similar position. By sharing experiences, guidance and advice, lives can be improved and fulfilled, my own experiences are testament to that.

DysNet is also launching an online community called RareConnect. It will be a trusted and monitored environment for everyone involved in Dysmelia to make connections. It will be available in English, French, German, Italian and Spanish, meaning the support can be spread wider, breaking down language barriers and opening up new connections and opportunities.

If you are affected by or want to find out more about Dysmelia then please do visit DysNet

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#Blogging4Madeleine Campaign Update

It’s been two days since the launch of #Blogging4Madeleine and I am overwhelmed by the amazing support we have had for the campaign! We’ve had 43 blog posts in 48 hrs!

There have been some truly inspired and heartfelt posts, some speaking of first hand experience and some opening some very interesting debates.

I would urge you to take the time to read some of them across at the #Blogging4Madeleine link up that Britmums very kindly hosted for us. I will also be sharing some of my favourite via my social media accounts over the coming days.

If you haven’t already please consider joining the #Blogging4Madeleine campaign. We want to spread the word to all four corners of the globe that this little girl, as unfortunately so many others, is still missing and needs to be returned her to her mummy and daddy where she belongs, and who miss her so so much.

Thank you

x

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