Our aims are to:
❤️ Raise awareness
❤️ Fund medical research
❤️ Make a difference
❤️ Bring hope to others
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 Gail, Matthew, Louis, Nicole and Jessica xxx
We are absolutely delighted to report that Brineura, the drug that treats Batten Disease, will be available via NHS England by the end of the year. Thank you so much to everyone who has supported us on our journey so far – friends, family, our local community here in Throckley and Newcastle, Batten families in this country and the Batten Disease Community around the world. We are prouder than words can describe 💕
Matthew and Gail recently attended an All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions in Parliament for the launch of the Genetic Alliance project ‘Action for Access’.
If you’d like to donate, please see our trust bank account details below.
Sort code : 20-59-97
Account number : 73158594
Account name : The Rich Family Donation Trust
Anything you can spare is greatly appreciated, thank you so much.
Can You Help?
We have been blown away by the generosity of people offering their time, donating items for our fundraising events and raising money for our campaign.
Please get in touch if you think you might be able to help.