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

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.
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!