Restoring hearing and regenerating auditory neurons Excellent to have Albert Edge, Professor of Otolaryngology, Harvard Stem Cell Institute and Massachusetts Eye and Ear Hospital presenting from Boston US on Treating Hair Loss By Replacing Cochlear Hair Cells

Incredible parent story by Carla Golledge - so powerful and brave sharing the reality of being Mum to Cameron who is deaf blind with autism. There is nothing as powerful as a parent speaking from the heart ❤️

The Hearing Therapy Session has started - inspirational to hear about the work on Usher Syndrome and the therapeutic window ‘Developing therapies for deafness and deafblindness.’ Thank you Aziz El-Amraoui, PhD, Associate Professor Institut Pasteur 🙏

Still buzzing after the NDF conference! Brilliant presentations by inspirational speakers who addressed Norrie Disease with compassion, sensitivity, hope, honesty and unrivalled expertise - we feel so lucky! Great Ormond Street Hospital Charity Great Ormond Street Hospital for Children UCL Great Ormond Street Institute of Child Health NIHR UCLH Biomedical Research Centre Moorfields Eye Hospital NHS Foundation Trust

We are so thankful to UCL Great Ormond Street Institute of Child Health NIHR UCLH Biomedical Research Centre Great Ormond Street Hospital for Children Great Ormond Street Hospital Charity for bringing together our first conference so flawlessly! You supported us to achieve something that felt impossible a year ago! 🙏

Thank you so much to the fabulous stall holders for supporting our Norrie Disease Conference 2023. So brilliant to have you there and learn about the invaluable support you provide 🙏 LOOK Sense Sense TouchBase Pears HumanWare

Wishing you all a merry Christmas and a massive thank you to everyone who has supported the Norrie Disease Foundation in 2023! We move forwards into 2024 with much hope! Thank you everyone again for supporting the Norrie community with such belief and commitment.

The 2023 NDF conference brought together Norrie families & medical professionals to share experiences & learn about the pioneering research into treating the hearing loss. Since then we’ve connected with new families interested in supporting the research. The future is hopeful!

Great NDF board meeting last night to kick off our 2024 activities! Exciting plans ahead including a community family day which we’ll be in touch about. Looking forward to seeing everyone again 😃

Our very own ambassador Anthony Ryers lnkd.in/eF4YsgS4 has produced a series of videos entitled “Flight For Sight”highlighting Anthony’s story as a blind DJ and Producer, and one half of the Trance DJ due XiJaro & Pitch. view the videos here lnkd.in/eJ3HiczA

We are looking for PR help! If you know of anyone looking to use their PR skills voluntarily or in a paid role who would like to help us raise awareness of the condition and the hearing loss research at UCL GOSICH please let us know! 🙏

Great check in with the GOSH-ICH research team. Fantastic to hear of Dr James Arwyn-Jones progress into recruiting individuals & families affected by Norrie into the ND natural history study & research! New registration form to be shared soon!

We had the privilege to listen to the GOSHCC National Call panel review for our shortlisted research application ‘Norrie disease therapy targeting endothelial cells’ - Professor Jane Sowden. Feeling thankful to have made it this far. 🤞🤞 media.gosh.org/documents/GOSH…

Help us raise funds for life changing hearing loss reaearch 🙏 facebook.com/share/p/fk7EGt…

🤩 This is amazing Carla Danielle’s brave speech at the RNID fundraising gala. Thank you Carla for sharing your family story at The Bio Industry Assocation Gala on behalf of the RNID, speaking up about Cams condition and The Norrie Disease Foundation. facebook.com/share/v/yLNkt7…

The NDF had a brilliant Board meeting last night! The number of ND families and individuals who have registered their interest in supporting the hearing loss research at GOSH has risen in the UK and globally! Here’s the link to get involved. forms.office.com/Pages/Response…

Fantastic 🤩 Dr James Arwyn-Jones who by day works hard on the Norrie disease research is taking part in the Cardiff olympic distance triathlon on 30th June raising funds for the NDF! Please have a look at James’s page and consider donating! 🏊 🚴 🏃‍♂️ 🙏 justgiving.com/page/james-arw…

Sharing exciting news for the Norrie disease community. Well done & huge thanks to the research team 👏🙏 UCL Great Ormond Street Institute of Child Health NIHR UCLH Biomedical Research Centre Great Ormond Street Hospital for Children ucl.ac.uk/news/2023/sep/… Image shows a Dr looking into a girls ear

The NDF & Prof Jane Sowden’s research group have won the Patient & Public Involvement & Engagement award from the British Society for Gene and Cell Therapy which recognised the achievement of the Norrie disease conference in bringing patients and research

Huge thanks to James Arwyn-Jones our wonderful Norrie disease PhD scientist fellow at GOSH who raised a whopping £1,303 for the NDF by taking part in the Cardiff triathlon! Amazing! 🎖️🥳 🤩 Image of James sporting an NDF T shirt looking very happy mid triathlon!!