Welcome to Our World
On behalf of the Board of EDRIC - Björn Håkansson, Klaus Becker, Monika Eisenberg-Geginat and myself - I'd like to welcome everyone to the new DysNet website and our fabulous multi-lingual RareConnect DysNet community.
We've set up DysNet to help to improve the lives of everyone in the world affected by limb difference. That's quite an undertaking and it's something that can only happen with your support and cooperation.
Take a look around the site and, if you like what you see, please let everyone in your network know who and where we are. That means sending the link on social media like Facebook, Twitter and LinkedIn or just pasting the link into an email and saying something like, "hey, check out this great new website for limb difference".
So for us, today marks the culmination of years of planning and several weeks of frenetic activity to ensure that everything is ready on time. Not only do we want people with dysmelia to start sharing their experiences with each other and helping each other to solve problems, but we also want organisations of people with limb difference to join EDRIC - the organisation of which I'm proud to be chairman.
Although today is an occasion for celebrating our success, it's also tinged with sadness: our great friend and supporter, Sabine Becker, had a stroke last week and is now recovering in hospital.
For those who do not know Sabine, to say that she is an inspiration to us all is something of an understatement. Like me, she was born with disabilities caused by the drug, thalidomide. Sabine is German but has lived life to the full in the USA - New Mexico to be precise. She's a motivational speaker and keen surfer as well as an unashamed dog lover. She has been incredibly generous with her photos - as has the unstoppable Jessica Cox - which she has given us permission to use to help us to promote DysNet. The slideshow on the DysNet homepage shows her doing what she loves best - surfing with the dog.
Disabled people in the US do not benefit from the same social protection that those of us in Europe have come to take for granted. Sabine was in the process of moving from Albuquerque to San Diego, California. She and her partner had sold most of their belongings to help fund the move. Now they desperately need funds to enable Sabine to go through the rehab process after her stroke.
A fund has been set up and several people have already given generous donations but I'm sure that she could use anything you can spare.
I'm sure, in time, Sabine will be back to her old self. I certainly hope so because it's thanks to her energy, her inspiration, that we've been able to bring this project to where we are today.
So many of us are admitted to hospital and find ourselves in the disturbing position of seeing puzzled looks on the faces of those in charge of our care. It could be something as simple as taking a blood pressure reading or extracting a sample of blood for analysis. DysNet exists to share all of the knowledge around dysmelia so that we can educate everyone who is unaware of our needs.
Please spread the word.