Hello and welcome to…
The Nicole Rich Foundation
Raising awareness of Batten Disease.
We are delighted to welcome you to our website! Our aim is to raise awareness of Batten Disease to fund medical research & support into CLN2 specific treatments & ultimately find the cure…
Batten Disease is an utterly devastating condition, yet it is widely unheard of…and we want to change that. You will meet our family, learn more about the condition, you will also be able to find out all of the different ways you can help us.
Thank you visiting and we hope you are inspired to join us and be part of our journey.
Love from the Rich family x
Thank you to everyone who has supported us and our team of 20 runners who successfully completed the Great North Run. We also had 10 amazing little people who took part in the Mini GNR on Saturday, raising money for us too.
See if you can spot us in the ITV video below!
We recently hosted our second Sweetheart Ball to raise awareness of Batten Disease and gather more supporters, raising a fantastic £6,490!
Please help us continue to make a difference by watching our video from the night and sharing it with your family and friends.
We recently received the devastating news that NICE have not recommended funding enzyme replacement therapy on the NHS for children with CLN2.
Please help us by signing the petition to give our children in this country the right to have this pioneering treatment.
Once you choose hope, anything is possible…
We hope our website gives others strength in their difficult times – whatever life throws at you, anything is possible if you have hope in your heart. x
Get in Touch
We have been blown away by the generosity of people offering their time, offering to take our family on wonderful experiences, bringing us the most thoughtful gifts and raising money for our fundraising campaign. Please get in touch and join our family.
We are delighted to be working with the Batten Disease Family Association (BDFA) to raise awareness of Batten Disease and fundraising towards vital medical research and the care of Nicole and Jessica.
Please visit the BDFA site to find out more about the condition.
We would like to pay a special mention to the amazing doctors and nurses who have cared for Nicole and Jessica so far, both at the Royal Victoria Infirmary in Newcastle and Great Ormond Street Hospital in London.