Who we are
About Anisia's Hope
A UK charity for families facing any form of Batten disease — so no one has to walk that path without a map and without a clear destination. Warm, clear, and dignified. Hope without promising what medicine cannot yet guarantee.
Our purpose
Anisia's Hope - Fighting Batten Disease is a UK Charitable Incorporated Organisation (CIO), registered with the Charity Commission on 21 September 2026 (charity number 1219714).
We exist for families facing any form of Batten disease (also called neuronal ceroid lipofuscinoses / NCLs, including CLN1–CLN14). Our purpose is that they are less alone, better informed, and practically supported — and that research and public understanding of these conditions grow stronger. Our three charitable objects are support, research, and education (see below).
Our tone is simple: warm, clear, and dignified. We speak of hope without promising what medicine cannot yet guarantee.
Remit
Who we serve
Anisia's Hope serves families facing any form of Batten disease — the group of conditions also called neuronal ceroid lipofuscinoses / NCLs, including CLN1–CLN14. We are not limited to one subtype.
Anisia’s story is the spark that founded the charity. The mission is wider: practical support, research, and education for the whole community affected by these rare diseases.
For families
Newly diagnosed
If your child — or someone you love — has just been diagnosed with Batten disease, you may feel overwhelmed. That is understandable. Many families describe the early days as a blur of appointments, unfamiliar words, and hard decisions.
We are not an emergency or crisis service, and we do not give medical advice. If someone is in immediate danger, call 999. For urgent health advice in the UK, use NHS 111 or your clinical team. For emotional crisis support, UK services such as the Samaritans (samaritans.org, 116 123) are available 24 hours a day.
Practical first steps (tonight or tomorrow)
- Lean on your clinical team first — neurology, metabolic, genetics, or a specialist clinic. Write down questions as they come; you do not have to remember everything at once.
- Ask for clear next appointments — who to call, what tests or referrals are planned, and who coordinates care.
- Read plain-English answers when you are ready — our FAQ covers what Batten disease is, what we can (and cannot) do, and when donations open.
- Use trusted signposts — public NHS information and the Batten Disease Family Association (BDFA) (UK charity 1084908) are listed on our other support page.
- Email us when you want a human reply — info@fightingbattendisease.org. Tell us what would help. We aim to reply within a few working days (we are a small early-stage CIO, not a 24/7 helpline).
What families often need first is not more jargon, but someone who understands that this journey can feel without a map and without a clear destination — plus clear information, practical help over time, and connection with others who have walked a similar path. We are building support pathways for families across all forms of Batten disease / NCL (CLN1–CLN14).
More: FAQ · NHS Evelina service · BDFA (1084908) · Charity 1219714.
Our beginning
Anisia's story — the spark
Anisia is a vibrant, courageous young girl. As of August 2026 she is eight years old. She has been diagnosed with Batten disease, specifically CLN2.
When Anisia was diagnosed, it revealed how little clear information there can be — and how lonely it is to navigate a journey without a map and without a clear destination. Her family’s journey has been shared publicly as Together for Anisia, including a separate JustGiving crowdfunding effort towards a personalised medicine path. That crowdfunding was a family campaign; it is not the same as this charity’s accounts or targets.
Anisia's Hope was founded so that families facing any form of Batten disease are less alone, better informed, and supported. From that spark grew a registered UK charity with a wider remit: practical support, research, and education for the whole community.
“To us, these are not small things. They are victories.”
“Maybe her progress cannot always be measured in steps. Sometimes, it is measured in seconds.”
We hold those words carefully. They speak of love and perseverance — not of clinical outcomes we cannot claim.
Looking ahead
12-month aims
These are aims for our early stage as a CIO — not achievements yet. We will update this list honestly as work completes.
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Aim
Live donate path
Online giving opens soon.
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Aim
First family-support pathway live
Make a clear, usable support pathway available for families who reach us.
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Aim
Apply research-grant policy before awards
Use our published research selection and governance framework (see Governance) before any awards.
Charitable objects
Our charitable objects
In plain English: we support families, fund research, and educate people about Batten disease. The registered wording (Clause 3) is below.
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:
- Providing or assisting in the provision of support, equipment, therapies, and services;
- 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;
- Advancing the education of the public, medical professionals and carers in all matters relating to Batten Disease, including early diagnosis and available treatments.
Note on object (2): Authorising research into prevention and cure is not a claim that a cure exists. We do not claim cures or invent clinical results.
For families: the constitution interprets “Batten Disease” as NCL in all forms, including but not limited to CLN1–CLN14. Family support is inclusive of those forms. The objects’ “including CLN2 disease and related forms” wording is legal scope language.
Clause 3 (Objects) was amended by resolution of the trustees dated 16 September 2026. Constitution dated 20 January 2026 (foundation model CIO; principal office in England).
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Support
Support, equipment, therapies, and services for people affected by NCL / Batten Disease.
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Research
Grants for research into causes, treatment, prevention and cure — and publishing useful results. Research into cure is not a claim that a cure exists.
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Education
Education for the public, medical professionals and carers — including early diagnosis and available treatments.
We do not currently list research partners. When formal partnerships exist and are approved for publication, we will say so clearly. This page does not give medical advice. Please consult qualified healthcare professionals for personal medical decisions. Within our constitution we also have powers (for example to fund treatments, therapies, trials, equipment, and travel in the UK or overseas) — these are not live programmes yet.
Governance
Safeguarding: We are committed to the safety and dignity of children and vulnerable people. Complaints: write to info@fightingbattendisease.org. Charity Commission number 1219714.