We were delighted to be chosen to be Maidenhead’s Thames Riviera Hotel charity of the year. Early in January we began planning a September event to mark the 3rd Official Usher Syndrome Awareness Day (USAD).
It was soon realised that the Hotel would be hosting an Amy Winehouse Tribute the day before and decided MWT would run USAD around this event.
Friday evening was all about #InitTogether the importance of bringing an often isolated community together for a fun, sociable evening around a three course meal and music. It was a great evening.
Saturday morning was all about our accessibility and usability workshop run by our own Molly Watt and work colleague and friend of Molly Watt Trust, Sigma’s Chris Bush. The chance to learn and be interactive with each other whilst learning how to maximise the many uses of handheld devices, smartphones and tablets which can provide real enablement.
The feedback for the whole weekend has been very positive:
‘I have never met anybody else with Usher Syndrome, a room full of Ushers, fantastic.’
‘Thanks for your very informative workshop, one little tweak and my life is made much easier.’
‘I learnt more about accessibility features on my iPhone at your workshop than I did after an hour at an apple store!’
‘Your event was the first I've ever attended, I was so nervous but found everybody so friendly and helpful and I now have friends with Usher Syndrome.’
‘I appreciated the patience of Molly and Chris being so patient, I was comfortable to ask over and over until I understood a few useful tips about accessibility on my iPhone.’
‘I thought I knew all about accessibility on my iPhone, I was wrong, the MWT workshop taught me so much.’
‘I found your workshop more useful than anything else I’ve experienced. I came away feeling enabled not so disabled.’
Just a few of the many quotes received since the workshop along with requests to run the workshop around the country.
We would like to thank the Thames Riviera Hotel for hosting our event and continuing to support our cause. To their staff who took on board some very important points for the comfort of our guests. Providing a well lit room, waitress service to our guests and little things like contrasting tablecloths and crockery and blue glasses a huge assistance to those with visual impairment. Staff were also very helpful with the many guide dogs on site even helping escort several guests across the busy road and directing to the bigger park close by.
This was the first event we have held in the south east, even so we had guests and support from all over the country all wanting to be a part of our #InitTogether #Ushlookslikethis weekend.
All in all the whole weekend was a huge success and one we would like to repeat. We look forward to Usher Syndrome Awareness Day 2018.
Our sincere thanks go to Mark Dunning and his team at the Usher Coalition for their hard work in putting Usher Syndrome on the calendar thus resulting in so many deciding to embrace the opportunity to raise awareness of Usher Syndrome in one way or another, it's been fantastic.
Our own campaign #Ushlookslikethis has been run alongside "Own The Equinox” #USHEQX and has been a huge success.
We would like to thank each and every person who provided a selfie, photo or quote, who posted, tweeted, retweeted or favourited our posts all over social media in our attempt to raise awareness of Usher Syndrome in such a positive way and to include as many of the Usher community, their friends and family as possible.
It has been fantastic seeing so many great pictures from all around the world, also to see the many other Usher Syndrome Awareness Campaigns taking place.
It is your pictures and quotes that have made our campaign work and of course the irony that #ushlookslikethis doesn't look like anything so cruel is this hidden condition.
The Usher Syndrome Awareness drive this past few weeks has given lots the confidence to come forward and to be part of the ever growing community and for them in their own way to not feel isolated or alone and to have a voice.
We have had a record amount of contact from people wanting to introduce themselves and in one way or another be a part of raising awareness of this cruel condition.
It has been amazing watching so many involved in their own awareness campaigns which will definitely have raised the profile of Usher Syndrome.
To see that our handwork has been recognised online has made the campaign a real success:
It is fair to say #WeOwnIt
The primary objective of The Molly Watt Trust is to raise awareness of Usher Syndrome something we do all year round and something we will continue to do along with offering support, fundraising for small items of life enhancing equipment and to work alongside other larger charities.
There remains much to do.
Once again a huge thank you to all who have taken this opportunity of being a part of this worldwide awareness drive we are quite sure that as a result of the hard work by so many that there will be many many more people who will if nothing else have heard of Usher Syndrome which is fantastic.