CUREUSHER

CUREUSHER is a UK-based registered charity (charity number 1181293) dedicated to supporting people living with Usher syndrome, raising awareness, and funding research aimed at finding a cure for this rare genetic condition.

Mission and Activities

The charity's primary focus is on increasing awareness of Usher syndrome—a condition characterized by combined inherited hearing loss and visual impairment due to Retinitis Pigmentosa (RP), sometimes accompanied by balance difficulties. Usher syndrome affects approximately 4 to 17 individuals per 100,000 worldwide and is categorized into three subtypes based on hearing loss severity and balance issues.

CUREUSHER works to support those affected by the syndrome through advocacy, education, and funding cutting-edge medical research. They prioritize meaningful engagement with the community and stakeholders, including healthcare professionals and policymakers, to amplify the voices of individuals living with Usher syndrome.

Research Funding and Partnerships

One of the charity’s significant initiatives includes directly funding leading research projects in the UK. CUREUSHER has established an ongoing funding agreement with University College London (UCL), specifically supporting the work of Professor Mariya Moosajee, a Professor of Molecular Ophthalmology at the UCL Institute of Ophthalmology. Her research is focused on advancing understanding and treatment options for Usher syndrome.

Funds raised through CUREUSHER’s various campaigns are channeled directly into these research efforts, making a tangible impact in the quest to find a cure.

Advocacy and Community Support

CUREUSHER also engages in advocacy, with leadership informed by lived experience of the condition. The charity actively collaborates with healthcare systems, government bodies, and parliament to ensure that the needs and challenges faced by those with Usher syndrome are recognized and addressed.

While there is currently no cure for Usher syndrome, CUREUSHER provides support and resources for affected individuals and families to improve quality of life and foster hope for future medical breakthroughs.

Governance and Structure

As a registered charity under UK law, CUREUSHER operates with transparency and accountability in its charitable activities, governance, and fundraising. It targets a broad demographic, including children, young people, and the elderly, all impacted by Usher syndrome.

CUREUSHER continues to be a leading force within the rare disease community, combining research funding, advocacy, and support to transform the landscape for those living with Usher syndrome.

[1] https://cureushersyndrome.com [2] https://register-of-charities.charitycommission.gov.uk/en/sector-data/top-10-charities/-/charity-details/5130006 [3] https://www.instagram.com/cureusher/ [4] https://register-of-charities.charitycommission.gov.uk/en/sector-data/top-10-charities/-/charity-details/5130006/what-who-how-where [5] https://voda.org.uk/wp-content/uploads/2022/06/CUREUsher-Trustees-Ad.pdf