Run for team NDF in 2019

Do you want to run and raise funds for the Norrie Disease Foundation?

We have secured charity places at the 2019 Brighton and London marathons and the Bath Half marathon. All are iconic events on the running calendar which sell out every year.

100% of funds raised will go towards a Family Fun Day to provide a safe and fun environment and peer support for all members of the family affected by Norrie disease.  All runners will receive a NDF running vest, and support and advice on training and raising sponsorship.

Contact kellyrobinson@norriedisease.org.uk for information.

Please note the deadlines to apply for places:

  • London Marathon – Friday 19th October 2018
  • Bath Half marathon – Friday 18th January 2019
  • Brighton Marathon – Friday 1 February 2019

Do you already have a place at an event and wish to join Team NDF? Please get in touch with Kelly

Professor Maria Bitner-Glindzicz

Prof Maria Bitner-Glindzicz

The Norrie Disease Foundation and its Medical Advisory Board are devastated to share the sad news of Professor Maria Bitner-Glindzicz’s passing. Maria was a dear friend to the Norrie community and a brilliant geneticist and researcher. She was the driving force behind the creation of the Norrie Disease Foundation, the formation of its Medical Advisory Board and the pioneering research she initiated into the Norrie Disease hearing loss to see if it can be treated with gene therapy. The Norrie Disease Foundation wouldn’t be where it is today without all her incredible support.

Maria went out of her way to meet and listen with families to see how she could help them; she was our champion and committed advocate. Maria took a personal interest in all of the families she came across and went to great lengths to help each and every one of them. For a researcher to agree to help such a rare community was incredibly precious. Maria will be so missed by the Norrie community and throughout the genetic and hearing world. She was one in a million. Our thoughts are with her family and friends at this sad time.

Anna and Louise

Heath For Health 2018 – £2,054 raised for NDF

 

Heath For Health 2018 – Amazing £2,054p Raised for the Norrie Disease Foundation

The Norrie Disease Foundation were very privileged  to be one of 3 charities that John Ball School choose to support for this year’s Health for Health Family Fun Run.

On Sunday 20th May an amazing 650 parents and children from John Ball School and the local community ran either 1 mile or 5 km to raise funds for the Norrie Disease Foundation and two other fantastic charities Shine Cancer Support and Age Exchange raising an incredible £2,054p for the 3 charities.

The day of the fun run was a culmination of heaps of very hard work and dedication by the amazing  Anna Townsend and Angela East without whom this event would not be possible. Well before the race started at 08.30am Anna and Angela and a team of staff from John Ball School and some volunteers met on the heath in wonderful sunshine to commence with preparation of putting up gazebos, organising refreshments and snacks, blowing up balloons and organising refreshment points along the course.  The operation ran with military precision (Anna and Angela!) and much merriment and whooping as it all came together helped along enormously by one of the very generous and excellent sponsors Hamilton’s, who arrived with the king of all gazebos to add the finishing touches.

No one should run without warming up and this was led by John Ball’s very own PE Teacher Johnny and at just after 10am following a quick blast of the starting horn the 5km began. Sprits were high amongst the determined runners as they set their own paces and styles whilst spectators came out in full force to cheer along the brave runners. It was such an amazing atmosphere, all the runners did remarkably, and it was brilliant to see families and teachers tackling the course with such enthusiasm and big smiles throughout.

The 5km was quickly followed by the 1mile and again the spirit and camaraderie was incredible – great to see so many of the younger pupils from John Ball powering through the 1mile making it look a complete breeze. Josh Horrobin aged 9 who has Norrie disease was joined by his Dad, Simon, to run this race – thankfully Simon had saved enough energy after completing the 5km with Josh’s sister Chloe to join in with this one too!

It was so wonderful to have such a fantastic event take place – showing immense community spirit and support. Hundreds of medals were given out and there was such a buzz on the heath to celebrate a very special and unique event all in the aid of charity.

The Norrie Disease Foundation wish to say a huge thank you to everyone who ran and supported this amazing event and to John Ball School and Hampton’s Blackheath and HSBC for their generous sponsorship. And last of all but not least a massive thank you to Anna Townsend and Angela East for making it happen.

 

 

 

Run for team NDF!

The Royal Parks Half marathon on Sunday 14 October takes in some of London’s most iconic landmarks, as well as four Royal Parks.

If you would like to secure a charity place and raise funds for the Norrie Disease Foundation, please contact kellyrobinson@norriedisease.org.uk to find out how to sign up to #TeamNDF

Thwo sking solo

Theo goes skiing

Theo skiing with his instructorMum Jo shares her son Theo’s story as he takes to the ski slopes for the first time ……

Theo is 6 years old and has no vision due to Norrie disease. Theo keeps us busy with all his activities including piano, swimming, horse riding and Beavers but this weekend we thought we’d try something new.  We booked him in for a skiing lesson as we are keen to let him experience as much as possible.

We explained that he would have to wear heavy boots like he had worn when he had been ice skating and then have long plastic strips attached to the boots.

The instructor he had was great at explaining everything, she was concerned he had two left legs at first, he’s not too good with his left and right. She got him to move very slowly a few feet downhill so he could get an understanding of the pose he needed to be in and a feel for moving with skis on.

After doing that a few times off they went to the top of the ski slope and she skied down with Theo in-between her legs, the smile and shouting out with excitement said it all.  Theo loved it and said ‘I would make the hills bigger so you go on for longer’. He then came down with a rope round him with the instructor behind him and absolutely loved it.

He had such a fabulous time, we only booked a half hour slot as that’s usually enough for a child’s first time but he was having so much fun that he had an hour.  Don’t let being blind hold you back from having fun. So we’re booked in again next week…..