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

Educational Setting Leaflet

The NDF Educational School Leaflet aims to provide general information about Norrie  Disease (ND), its management and how to support the education  of children and young people in schools and educational  settings.

You will find this leaflet useful if you work in a school or other educational setting with children or young people with  ND.

If you are the parent or carer of a child or young person with  ND, then you could use this guide to engage with the school or  educational setting about your child’s needs.

Trance tunes in a massive Norrie Disease fundraising marathon.

11th-12th July Keep Our Worlds From Fading To Silence Fundraiser

Keep Our Worlds From Fading To Silence Fundraiser – Saturday 11th July – Sunday 12th July 2020

This will be huge! Norrie Disease Foundation Ambassador Anthony Ryers who has Norrie Disease & XiJaro & Pitch are live streaming some incredible Trance tunes in a massive Norrie Disease fundraising marathon. Some of the biggest key players in the Trance community have come together to collaborate while raising money to go towards the Norrie Disease Foundation to fund further ground breaking research into Norrie Disease.

Anthony says ‘Words can’t explain how excited are we about this one! Music is everything to us and we want to share the love with you and the world too! The countdown to the big day has now begun! On Saturday 11th July at 3pm CET through Monday 13th July at 5.00am CET, get ready for 36+ FULL HOURS of jam-packed music from household names including Alessandra Roncone, Darude, Elevven and many more. In addition to this, Xijaro & Pitch will be live streaming a phenomenal Trance extravaganza of 12 hours straight to celebrate hitting a whopping 2K followers on Twitch’!

Xijaro & Pitch have been warming up for the big weekend with a series of incredible live streams. A quote from one of XiJaro & Pitch’s fans reads ‘still on….. The stream that is breathtaking, the music unreal, the support endless and the love mind blowing. When a blind DJ and producer shows the world that you do not need eyes to see L O V E . They say your vibe attracts your tribe – and in here we know its true! WELCOME https://www.facebook.com/events/1042897486112707/

Thank you so much XiJaro & Pitch – everyone at The Norrie Disease Foundation is so grateful to you all! Good luck!
#bigevent #tranceevent #trancemusic #lovetrance #norriedisease #trancefamily #djs #lockdowndjs #loveisallyouneed #clublife #weareinthistogether #tranceaddict #trancelife #trancenation #trancelovers

Set times are here so mark those calendars with all the details! Can’t wait for the ride

SET TIMES (ALL IN CET):
SATURDAY 11TH JULY

3pm – 5pm Rinaly (twitch.tv/rinalymusic)

5pm – 7pm Alessandra Roncone (twitch.tv/alessandraroncone_music)

7pm – 10pm SURPRISE SET

10pm – 1am Talla 2XLC (twitch.tv/realtalla2xlc)

SUNDAY 12TH JULY

1am – 5am R3S0NANC3 (twitch.tv/r3s0nanc3)

5am – 8am Miyuki (twitch.tv/djmiyuki)

8am – 11am Elevven Music (twitch.tv/elevvenmusic)

11am – 12pm Ruben De Ronde (twitch.tv/rubenderonde)

12pm – 2pm Darude (twitch.tv/darude)

2pm – 2am XiJaro & Pitch 12-HOUR CELEBRATION FOR 2K FOLLOWERS (twitch.tv/xijaroandpitch)

MONDAY 13TH JULY

2am – 5am Somna (twitch.tv/somnamusic)

If you’d like to donate, please visit  https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=AnthonyReyers&pageUrl=1

Amazing funding news

We are so thrilled to be able to share the news that Sparks and GOSH  Charity will be co-funding the research into the hearing loss associated with Norrie Disease.  We are so grateful to Sparks and Gosh and would like to say a huge thank you and congratulations to Professor Jane Snowden who will be leading the research.

We are so proud of our community and cannot thank everyone who helped us raise the £62,500 needed for our contribution to the funding enough.

Well done everyone.

BBC’s Antiques Road Trip Auctioneer Charlie Ross; Wendy Horrobin; NDF Trustee Theresa Peacock & Downton Abbey’s Matt Barber

Charity Concert

NDF Chair Wendy Horrobin and Trustee,  Theresa Peacock were honoured to
attend the 20th Christmas Carol Concert in aid of Great Ormond Street
Hospital Children’s Charity.

The beautiful carol concert set in St
Paul’s Church Knightsbridge was hosted by actor Matt Barber, and
featured readings by Lord Julian Fellowes; Dame Penelope Wilton; Emilia
Fox; Jason Isaccs; Jessia Hynes; Samantha Bond and star patient readers
Paris and Rue.

After the concert there was a fundraising reception hosted by BBC TV’s
auctioneer Charlie Ross, raising money towards the new Sight and Sound
Centre at Great Ormond Street Hospital and research into treating the
Norrie disease hearing loss.

Wendy shared her son, Josh’s journey of
living with Norrie disease from local care through to meeting
specialists at Great Ormond Street Hospital who had knowledge and
expertise in treating families with the condition.

Wendy spoke about how
being treated at Great Ormond Street Hospital had made a huge difference
to the family and given them hope for a brighter future for Josh
especially with the pioneering hearing loss resesarch which is taking
place.

Wendy said ‘Currently there is no cure for Norrie disease, so
treatments that target preserving hearing loss offer the difference
between independence as an adult or not.’

The evening raised an incredible £300,000.

A huge thank you to Great
Ormond Street Hospital and Great Ormond Street Hospital Children’s
Charity for all the amazing work you do and to Trailfinders for
sponsoring the event.