2020 Fundraising

2020 has been extraordinary for many reasons, not least for the fact that we have been living through a world pandemic, but also for the
remarkable ways the Norrie Disease Foundation’s efforts to fundraise has been supported by our amazing community.

Back in 2019 we called upon our small community to help us raise the £62,500 needed to form a research partnership with Great Ormond Street Hospital Charity and the Sparks Charity. At the beginning of 2020 we were able to share the amazing news that our fundraising target had been reached.

The support that our small community has received was incredible. The efforts of so many meant that on Rare Disease Day (29th
February 2020) we were able to announce that GOSH and Sparks would be funding research into the hearing loss associated with Norrie Disease.

The ways in which the money has been raised has been both varied and inspiring, it included concerts, runs, bike rides, hugely generous
donations, sponsored walks, skydiving and car-washing.

When we founded the NDF in 2017 we could not have imagined how much could be achieved in such a short space of time. We are very proud of our community and the wonderful people who support it. As mentioned earlier, the start of 2020 saw us achieve our fundraising target, securing funding to enable a further 3 years of research.

Although we had reached our target, the fundraising continued a music festival and more sporting events were continuing to raise the funds we hoped would enable even more research in the future. And then Lockdown happened. Planned sporting events that usually help us raise funds had to be cancelled, and like many charities we were not sure whether we would be able to keep the fundraising momentum going.

However, we should have known that our community and supporters would keep things going. Some of our community took part in virtual events and continued with sporting challenges at home. These included The John Ball school Heath for health event which took place with a number of participants (including Josh and his dad cycling in the garden), Selina, one of our ambassadors took part in the 2.6 challenge, and Trustee Theresa completed the My Prudential Ride.

And then, the most unbelievable thing happened, the world of trance came along with its kind and generous community and has helped raise an incredible amount of money.

Our brilliant ambassador Anthony has a passion for music and is one half of the trance producer/DJ due XiJaro & Pitch.  During Lockdown he has been playing regular virtual sets, bringing much needed joy. In July XiJaro & Pitch, along with other key players in the Trance community hosted 36 hours of non-stop Trance music to raise awareness of Norrie disease and raise money to fund research into the hearing loss associated with the condition. As part of the 36 hours of non-stop music, Anthony played a 12 hour set! Our chair Wendy and Trustee Theresa were fortunate to be able to watch parts of Anthony’s brilliant set and see all the comments from all around the world. The love and support for Anthony was just amazing!

I’m not sure I have enough adjectives in my vocabulary to describe how incredible the generosity of the Trance community has been, but
incredibly Anthony has raised over £30, 000 for the Norrie Disease Foundation.

So, the exciting news is that the money raised by Anthony, combined with other fundraising efforts of the Norrie community, has enabled us to secure enough money to fund more research toward finding a therapy for the hearing loss associated with Norrie Disease. We will share more information about this next year.

The board of trustees would like to thank all of those who have helped make the funding of life-changing pioneering research into Norrie
Disease possible.

Theresa Peacock
NDF Trustee

Cam

Cameron’s smile – my wonderful new bed

I came home from school to find my new bed has been delivered.

I used to have a Kinderkey cot, with 6 foot enclosed padded sides, but due to my development over the past year, we decided I was now ready for a high low floor bed.

This will help my independence so much, being able to get in and out of bed all by myself, and being able to play and chill out in my bedroom freely.

The bed goes right down to the floor for sleeping, and it also raises and tilts for changing and feeding.

We will also be adapting my bedroom door and installing video monitors to make it as safe as possible for me in the night.

I love my new bedroom so much  💙

I hope I manage a good nights sleep in my new bed this evening.

Teresa and a cut out of Bruce Forsyth

Strictly come fundraising

Teresa and a cut out of Bruce Forsyth
NDF trustee, Theresa Peacock, turned the big Four-O earlier this year and to celebrate she held a Strictly Come Dancing themed party!

Instead of gifts, Theresa asked friends and family to make a donation to two chosen charities.  Through their generosity, she was able to raise £300 for the NDF!
Theresa has just signed up to do the Royal Parks Half Marathon in October to raise further funds for the NDF, running might not be quite as much fun as the dancing she did at her party!  You can support the NDF by sponsoring Theresa through Virgin Giving.
If you would like to join her in running, there are still places available. You can apply for a place here.
Oliver Stowe with his medal

Well done Oliver!

The Norrie Disease Foundation had their first ever runner in the London Marathon this year.
Oliver Stowe was inspired to run for #TeamNDF because his young son, Grayson has Norrie disease.
Oliver said ‘I’m hoping that running the marathon will both raise much needed funds for the charity but also awareness of the condition, which hopefully in turn will bring more support to the families involved.’
Oliver did an incredible job showing determination and courage during his training despite having a knee injury.
Well done Oliver and a huge thanks from us all for raising an incredible £2,300!
Cam and Carla

Cameron’s Smile – Don’t be sad

We can not change the cards we are dealt in life, Just how we play the hand.

I do not see a disease or a condition when I look at you.

I do not see a disability, difficulties or problems.

I see your soul. A happy, carefree, determined, fearless, clever soul who has opened up my heart to a love that I never imagined.

Don’t be sad that I am blind.

Im far from sad.

I didn’t lose my sight.

I was born without it and I will never know any different.

You don’t need eyes to see the beauty in the world.

Everyday I sense it.

I touch it, I smell it, I hear it, I taste it.

I feel love, happiness and joy every single day.

The challenges I am sent make me strong and ready for the world.

Don’t be sorry I am blind.

You do not need sight to have vision.

The Norrie Disease Foundation funds animal workshops – visually impaired children may have little opportunity to touch and feel different animals and therefore, compared to their sighted peers, may have a more abstract or less realistic understanding of animals.