OpenCharities

Anisia's Hope - Fighting Batten Disease

Country
England & Wales
Charity number
1219714
Status
Registered
Reporting
Newly registered. The first annual return isn't due yet.
Registered
Sept. 21, 2026
Legal form
CIO

Address

Address
43b Hill Road
Keresley End
Coventry
CV7 8JQ

Activities

We support children, young people and adults affected by Batten disease (neuronal ceroid lipofuscinoses, CLN1-CLN14). Recently registered, we currently provide information, advice and signposting, and are establishing support covering equipment, therapies and services. We will fund research into causes, treatment, prevention and cure, and educate the public, professionals and carers.

Objects: The Objects Of The CIO Are For The Public Benefit: To Preserve And Protect The Health Of Children, Young People And Adults Affected By Neuronal Ceroid Lipofuscinoses (Ncl), Commonly Known As Batten Disease, Including Cln2 Disease And Related Forms By; (1) Providing Or Assisting In The Provision Of Support, Equipment, Therapies, And Services; (2) Providing Grants Of Financial Assistance To Organisations And Individuals Undertaking Research Into The Causes, Treatment, Prevention And Cure Of Batten Disease And To Publish The Useful Results Of Such Research; (3) Advancing The Education Of The Public, Medical Professionals And Carers In All Matters Relating To Batten Disease, Including Early Diagnosis And Available Treatments.

Classification

How
Makes Grants To Individuals, Makes Grants To Organisations, Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research
What
Education/training, The Advancement Of Health Or Saving Of Lives, Disability
Who
Children/young People, People With Disabilities, The General Public/mankind

Geography

Country
Germany, Italy, Spain, United States
Region
Throughout England And Wales

Trustees

Name Appointed
Alexandra Mocanu (Chair) Sept. 21, 2026
Alexandra Vicol Sept. 21, 2026
Liuba Zarea Sept. 21, 2026

Data