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

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!…

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

New research partnership

The Norrie Disease Foundation are very excited to announce their new research partnership with Sparks and Great Ormond St Hospital Children’s Charity national funding call to improve the treatment or quality of life of patients with Norrie disease, particularly focusing on the Norrie disease progressive hearing loss.
Child health research is significantly underfunded, with only 5% of UK research funding spent on projects relating to child health. Sparks and Great Ormond Street Hospital Children’s Charity (GOSHCC) fund groundbreaking research into a wide range of conditions. The pioneering projects it supports are carried out at leading hospitals and universities throughout the UK and continue to make a significant contribution to breakthroughs and new treatments being used by doctors all over the world.
The Norrie Disease Foundation has been invited to form a research partnership with Sparks and GOSHCC on its 2019 National Call – each year, £2 million in research funding to support pioneering project grant applications from researchers is available, with up to £250,000 is available for each grant application. This supports projects researching some of the most difficult and hard to treat childhood diseases and aims to improve diagnosis and develop more effective and kinder treatments for children who desperately need them.
With huge thanks to Sparks and Newlife, research into the Norrie disease hearing loss started in 2017 under the late Professor Maria Bitner-Glindzicz’s team at University College London Great Ormond Street Institute of Child Health. We are very excited to have the opportunity to move this research forwards thanks to the Sparks and GOSHCC national funding call.