Wednesday, October 24, 2012

The Molly Watt Trust

Today I wanted to let you guys know about this amazing new trust fund set up by Jane and Molly Watt.  

As some of you know, I've been talking to these amazing ladies for a while now, and I adore them...Even though I've never met them, I admire and respect these ladies like it's nobody's business.  The things these ladies are doing to raise awareness for Usher Syndrome is inspiring and just amazing! 

Recently they have set up this really neat trust fund in the UK, and all the proceeds go towards helping those who have Usher Syndrome.  It helps them get e-readers.  Here is what it says on the Facebook page that has been set up.

" have created this group to explain the reason behind setting up The Molly Watt Trust.
Through Molly we have learnt so much about Usher Syndrome, about deafness, about blindness, about deafblindness and latterly about guidedogs and guidedog ownership - I thank everybody who has over the past six years supported us along the way.
The biggest and most worrying thing I have learnt about Usher Syndrome is that it is very misunderstood.
Yes there are some medical experts, not many, and they know their stuff, also the odd multi sensory impairment teacher too, again, not many, but really, nobody knows Usher the way somebody living with it does.
As a Mum to a young person with Usher Syndrome, the most disturbing thing of all is the constant battle to get for Molly the things she needs to access our world and for me that is absolutely unacceptable.
Along the way I have learnt that the "post code lottery" is very evident with deafblind support and equipment and this often deprives this vulnerable group of access to the things we take for granted.
The Molly Watt Trust has been set up to try to help with things that cannot be funded elsewhere.
We have initially set our sights on funding access to books by way of Kindle or the like but are open to other suggestions.
May I thank you all for your support. Jane Watt"

 And what an amazing thing to do!  Being a library assistant I am obsessed with books.  I always have been, and usually I have 3 or more books on the go at one time.  Being a library assistant with Usher Syndrome gives me a different view.  When I see a book I want to read, the first thing I do is see if the font is big enough.  I now find it challenging reading those little paperbacks, and it takes me FOREVER to get through them.  I can't even imagine what it's like for those whose Usher is for more progressed than mine.  I also feel that I am a little more aware of how to help those patrons who do come in and need a little more assistant due to visual impairements.  Things such as CNIB./RNIB books are awesome, just plain audio books, Large Print books (which I just LOVE) and of course e-readers, and so much more!  Like I said, the technology is now there to help us who are visually impaired!
and again I am going to quote Jane below.

I'm just wanting to drive it forward as best I can because I believe accessibility is the key to making your lives a little less challenging.  We get so much from books and lots with Usher can't access a book, writing too small, glare from pages, same old, same old. Some people with Usher rarely get out and can't even access reading. Just an example.  There are so many gadgets that can make life easier so every penny helps" -Jane Watt

And she is right!  With today technology there is so much we can do to help those with Usher, and that is why this is such a worth while Trust Fund.  

Right now they are selling these really pretty bracelets that are pink and white (I am colored blind so I think it's pink...I could be wrong.) they say: Molly Watt Trust Supporting People With Usher Syndrome...and, or course, all proceeds go towards helping those Ushers in need!  
So please, do me a favor, go on facebook have a look at the Molly Watt Trust.
Or check them out on Twitter -

and yes, I am going to play the guilt card.  If you don't want to look for yourself, thats fine.  But look for me, look for Molly, look for my sister and those thousands of other people who have this eye condition.  See what it is, ask questions, tell your friends...Raise Awareness


Lisa C said...

the Molly Watt Trust FB page is a closed group, is there a better way to learn more?

JillyBean said...

I'm on it. I will ask and let cha know darlin.