Friday 9 August 2019

Support Selina To Save Sound

Fundraising. It is such a challenging task. There are so many worthy causes out there and so many charities seeking donations. In an ideal world we would donate to every charity if we could. I always try and give a few pounds here and there. I like the feeling that it gives me. The feeling that I am making a difference all be it small. Giving to charities definitely feels easier than requesting donations. Yet this is what I am here to do because the cause is something so personal and possibly life changing for me and my family.

Norrie Disease. It has stolen my vision and is threatening to steal my hearing too. It has stolen my brother’s vision, given him profound learning difficulties and also threatens to steal his hearing as well. It has also affected two of my uncles. One unfortunately passed away before I was born. He was blind and had profound learning difficulties like my brother and an epileptic fit (another symptom of Norrie Disease) took his life in his early twenties. My other uncle had his sight stolen at birth and Norrie Disease has already stripped him of his hearing. In short Norrie Disease has wreaked havoc on my family.

The cruel fact of the matter is that there is no cure for Norrie Disease. However, there is a glimmer of hope if the Norrie Disease Foundation can raise £62500 by February 2020. Please read on to find out more and how you can help.

Imagine A World Without Sight. Now imagine it without sound too. This is the reality facing people like me with Norrie disease.
Norrie disease is an ultra-rare genetic condition causing blindness/severe visual impairment from birth and deafness which can start in early childhood. In addition to this some also have issues with cognitive development.
There is currently no cure for Norrie disease.
There are around 40 known cases of Norrie disease in the UK and 500 globally; however we expect there are more families affected by this condition currently undiagnosed. Research into Norrie disease is severely underfunded and the current research looking into treating the hearing loss finishes in September 2020. If this research is not continued then children and families with Norrie disease have no hope in finding a cure before they lose their hearing as well. The progressive hearing loss is one of the most devastating symptoms of Norrie disease and we desperately need to continue this research but we need your help to do so.
The NDF was created in 2017 to respond to an acute need – to provide a support network, accurate info for families and professionals, and now, new research into Norrie Disease. The NDF is run solely by volunteers.
The Norrie Disease Foundation’s Vision is
To find a cure for Norrie disease hearing loss and to ensure the community has the support they need to live the lives they deserve.
Blind children with Norrie will go deaf too unless we fund further research now! Please help!
Thanks to Sparks and GOSHCC we have a chance to change this if we can raise £62500 by February 2020 to move forwards with pioneering research into stopping the hearing loss. Research into Norrie disease has already made a difference but the only way we can get more answers and results is to get more research done. Please join us on our journey of finding a cure - every single step is important.
This research has the potential to completely change the lives of those living with the condition - being able to identify why the hearing loss occurs, and when and what treatment to either halt or prevent the hearing loss is of huge importance to the Norrie community. Sound is incredibly important to those with visual impairment, so developing an additional sensory loss in late childhood/early adulthood is particularly hard for the individual. It is anticipated that the findings from the successful project would be adaptable to other relatable deaf/blind research projects.
If we don't raise a minimum of £62500 by February 2020 we can't stop our blind community becoming deaf too - please help us change this. A few ways you can help are outlined below-

Jeans for Genes
It would mean the world if you could get your child’s school, workplace or community group to sign up and hold a Jeans for Genes day between Monday 16 and Friday 20 September 2019. I am happy to go into your child’s school (within Leicestershire) with Guide Dog Calvin if they do sign up. All funds raised will go towards the research project. Feel free to pass my email address: selinalitt@googlemail.com to any schools. You can send photos of your Jeans for Genes day to me and we will post them across our social media. It is REALLY important when signing up that you select the Norrie Disease Foundation otherwise we won’t receive the donations. You can sign up here.

Face Book
Why not hold a fundraiser on Face Book in aid of the Norrie Disease Foundation when your birthday comes around. It is so simple to set up. Face Book will suggest setting up a fundraiser a week before your birthday. I did one this year and was delighted to raise £200 for the NDF. A massive thanks to my friends and family. Just one little thing to note, the search box is a bit silly so make sure you type ‘The Norrie’ in the edit area, as typing ‘Norrie’ doesn’t bring up the NDF for some unknown reason!

Amazon Smile
The next time you shop on Amazon instead of going through the main site go through Amazon Smile and select the Norrie Disease Foundation as your chosen charity. Amazon will then donate a small percentage to the NDF.

Run or Ride
Why not take a look at the running and cycling events the NDF has secured charity places for on their website. If you already have a place in an event you can still raise funds for the NDF, just let them know and you will be supported all the way.

DIY
Alternatively, you could create your own fundraiser. Perhaps a quiz or curry night? Football or tennis tournament? Fun day or music concert? Whatever it might be get in touch with the NDF and they will be more than happy to provide flyers advertising your event.

Just Donate
Finally, if you are feeling generous and would like to just donate a few pounds then that would be amazing. I have set up a fundraising page exactly for that purpose. You can visit it here Support Selina To Save Sound.

The NDF is such a small community with a tall target to reach. Every donation will be so gratefully received.

THANK YOU