Off Topic – take a second to help families of children with life-limiting disabilities. It’s Free.

9 May

Hi Everyone,

This post has nothing to do with iPads, iPhones or Mobile technology, but instead a cause dear to my heart.  I used to work with children and families affected by these kinds of diseases, and I post this plea in the memory of particular students of mine who have died.  A national medical conference for families is coming up that could help families of children with severe life-limiting disabilities.  Respite is a huge problem, so usually only one parent can attend.  The organisers have been looking for sponsors to help fund activities and care for children so that whole families can attend the conference, providing much-needed respite for parents and important information at the same time.  So far, no sponsors have answered the call so the organisers have applied for a Sunsuper Dream grant and are relying on votes to help them win $5000.   I’m just going to copy and paste Barbara’s words:

“Our national community of families affected by severe life-limiting muscle disorders like Duchenne muscular dystrophy, receive very little support. Sometimes the only chance to have time off from caring for their child is for parents to attend a medical conference to help their child, but this often means only one parent can go – the other one has to stay home to care for the child(ren). If our dream is realized, families will be able to attend the conference together from all across Australia and bring their children for a family holiday, if we can provide some activities for the children while parents are learning how to enhance their child’s quality and quantity of life from our international experts, brought to Australia every two years for this purpose. Parents have the chance to ask questions and learn about the latest treatments and international standards of care, but only if their children are safely and happily occupied. By bringing the whole family, parents can make precious memories with their children who weaken and die often before maturity, in a popular holiday destination either before or after attending this world class educational event.

Please vote for their cause on their Sunsuper Dreams wish page at http://sunsuperdreams.com.au/dream/view/children-s-program-for-neuromuscular-conference

You’ll see a pop-up for a survey window that you can ignore, and then you can click the Vote button in the top right.  You’ll be asked for your email address and then will be sent a confirmation email to register.  I think this is their way of preventing people from abusing the system.

If you can share this, I’m sure Barbara, the families and the children would be very grateful. (And if you know any sponsors that could kick in a few dollars, that wouldn’t hurt either!)

Here is a YouTube video that explains about one of the diseases, so you can see what we are talking about:

Sincerely,

Sarah

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