We have exciting news. We would like to take this opportunity to announce that after a long process, another one of our goals is a success!!! Canadian CLN2 Foundation is now a registered charity and will work alongside Cure For Claire. The charity status will open more doors and be able to help in many ways. We continue to advocate for not only Claire and Josef, but other Canadian children affected by Battens Disease CLN2.
As we move our focus to creating a foundation that will not just help our family, but all families suffering from this horrendous disease, I will not be updating the blog with updates with the kids. We will be using this platform to for research updates as well as programs and fundraisers that are happening.
You can always still see lots of updates on our facebook and Instagram page @cureforclaire and we hope to see you there, following, sharing, commenting and helping us grow our audience to reach the most people.
We need your continued support now more than ever. Gene therapy is close, Vision Gene therapy is even closer. We can make the change together for not only Claire and Josef, but so many other Batten Children. Families and their generous financial supporters are the only ones that make a difference in the rare disease space with funding research and treatment development.
Please visit https://canadiancln2.org/