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.

The power of sound concert

The Power of Sound

Norrie Disease Fundraising Concert, Saturday 16th November

7.30pm-9.30pm, St Laurence’s Church, Catford, London, SE6

Don’t forget to book your tickets!     www.eventbrite.co.uk/e/the-power-of-sound-tickets-748078833…

The Norrie Disease Foundation are delighted to be hosting a unique fundraising concert. Join us for an exciting and imaginative selection of works performed by Klio Blonz /flute, Mairead Sheerin & Hilary Dolamore /voices and Helen Chenaf /piano.

The evening will feature pieces from the classical masters – Bach, Mozart – to Irish folk songs and jazz idioms, there are stories to be told, emotions to explore, journeys to take. Two voices, a flute and a piano, entwining and creating an enchanting web of colours and soundscape.

It promises to be a magical evening and we are very grateful to Klio, Mairead, Hilary and Helan who are donating their talents free so that all proceeds will go towards The NDF’s target of £62,500 to support their exciting partnership with Sparks Medical Research Charity and Great Ormond Street Hospital Children’s Charity hoping to find a treatment for the Norrie disease progressive hearing loss.

Families: Babies to thirty-something

Norrie Family Meet

The Norrie Disease Foundation held its first funded Norrie family meet on Saturday 29th June thanks to an amazing grant from @jeans_for_genes & @geneticdisordersuk.

Fifteen families met in London and enjoyed soft play; mingling; bouncy castle; trampolining and meeting new and old friends.

Families also had an opportunity to speak to Dr Kaukab Rajput from Great Ormond Street Hospital and listened to an inspirational speech by David Wilkins ahead of his new career as a motivational speaker.

Thank you to the families who braved the heatwave to join us! Looking forward to the next one already! Well done Kelly Leggett for organising!

Families: Babies to thirty-something

Group photo of families ranging from babies to thirty-something!

Karim and Theo playing boppit

Karim and Theo playing boppit

Ethan enjoying fish and chips

Ethan enjoying fish and chips

David giving a speech

NDF Ambassador David Wilkins giving an inspirational speech ahead of
his new career as a motivational speaker

Families speaking to Dr Kaukab Rajput

Families speaking to Dr Kaukab Rajput

Zander enjoying soft play

Zander enjoying soft play