Support our work
Donate to Anisia's Hope
Your gift helps a registered UK CIO work steadily on support, research, and education for families facing Batten disease.
Why give
Batten disease (also called neuronal ceroid lipofuscinoses / NCLs, including CLN1–CLN14) is rare, progressive, and life-changing for children and families. Many people have never heard of it until it touches someone they love.
Your donation helps Anisia's Hope — a registered UK CIO (charity number 1219714) — work steadily under our three charitable objects: practical support for people affected by any form of Batten disease / NCL (including CLN1–CLN14), research grants (with a particular focus on CLN2 when prioritising awards), and education so more families and professionals recognise these conditions earlier and know what help may be available.
We are hopeful. We are also honest. We do not claim a cure, and we will not invent results. Your trust matters more than hype.
Where your money goes
Gifts to the charity are applied for the public benefit in line with our charitable objects (full wording on About and Governance):
- Support — providing or assisting in the provision of support, equipment, therapies, and services.
- Research — grants for research into the causes, treatment, prevention and cure of Batten Disease, and publishing useful results. Research into cure is not a claim that a cure exists.
- Education — advancing education of the public, medical professionals and carers, including early diagnosis and available treatments.
We do not publish made-up percentage splits. As the charity grows, trustees will report openly through the usual Charity Commission and annual reporting channels. Charity registration does not mean the Commission endorses our appeals.
Family crowdfunding is separate. Family crowdfunding for Anisia’s personalised medicine path (including the earlier JustGiving goal of £50,000 for one year) was a family campaign. Donations to this charity support the CIO’s objects above, not a personal trial fund, unless a future appeal says otherwise in clear terms.
Gift Aid (UK donors)
If you are a UK taxpayer, please consider adding Gift Aid. It allows us to claim an extra 25p for every £1 you give, at no cost to you, provided you meet HMRC’s Gift Aid rules and complete the declaration.
Gift Aid will be collected via an on-site declaration when online giving goes live. Payment processors do not reclaim Gift Aid for us — trustees keep records and reclaim from HMRC.
How we decide research grants
We have not yet awarded research grants. Trustee policy we will apply before any awards is published on our governance page. In brief:
- Prioritisation — Batten / NCL research with particular focus on CLN2; other NCL research is not excluded if trustees choose to fund it
- Essential criteria — scientific merit, ethics approval, qualified researchers at recognised institutions, publication commitment, relevance
- Review — trustee assessment, independent expert review, conflict-of-interest withdrawal, progress and final reports
- Standards — Helsinki / UKRIO / GCP where applicable / UK GDPR; publish positive and negative results; acknowledge the charity; lay summaries
See also how we keep education accurate. This is not a live grant programme until awards are made under that policy.
A few reassurances
- Anisia's Hope - Fighting Batten Disease is a CIO registered in England and Wales, charity number 1219714. View the Register of Charities entry. Registration is not a Commission endorsement of our appeals.
- We will not claim cures or clinical results we cannot substantiate.
- We do not give medical advice.
- If you meant to support the family’s personal JustGiving page, that is separate from CIO donations — thank you either way for caring about Anisia and others affected by Batten disease.