Frequently asked questions

Batten disease is a group of rare, inherited conditions that affect the brain and nervous system. It usually starts in childhood. Over time, children and young people can lose skills such as vision, speech, movement, and thinking — though every person’s journey is different.

Clinically, these conditions are also called neuronal ceroid lipofuscinoses (NCLs). Different genetic forms are often labelled CLN1–CLN14. Anisia's Hope exists for families facing any of these forms.

In general — and this is not medical advice — families are usually guided first by their clinical team (for example neurology, metabolic, genetics, or a specialist clinic). They can explain tests, follow-up, and any treatments or trials that may be relevant to your child’s specific form of the disease.

Alongside clinical care, many families look for clear information, practical help with daily life, and connection with others who understand. We can walk with you on that non-medical side; we cannot replace your doctors.

We are a newly registered CIO. Right now we can:

• Listen and respond to emails from families — we aim to reply within a few working days
• Point you to our newly diagnosed page and this FAQ
• Share careful signposts to other organisations and public NHS information families often find useful
• Keep building support, research-grant, and education pathways (see our aims on the About page)

Email info@fightingbattendisease.org and tell us what would help.

No. Anisia's Hope does not give medical advice. Always speak to a qualified clinician about diagnosis, treatment, and care.

Online giving opens soon.

See Donate for details. Questions: info@fightingbattendisease.org.

No. Family crowdfunding (including JustGiving for a personalised medicine path) is a family campaign. Gifts to this CIO support our charitable objects — support, research grants, and education — for public benefit. See the clear note on Donate.

If you are a UK taxpayer and meet HMRC’s rules, Gift Aid lets us claim an extra 25p for every £1 you give, at no cost to you. We will collect a Gift Aid declaration on the donate / thank-you flow when online giving goes live. Trustees reclaim Gift Aid from HMRC — payment processors do not do that for us. Details: Donate — Gift Aid.

No. Family support and this website’s research hub cover all forms of Batten disease / NCL equally — CLN1 through CLN14. When we award research grants, trustees will prioritise NCL research with a particular focus on CLN2; that does not exclude other NCL research if trustees choose to fund it. See research grant policy.

We aim to reply within a few working days. We are a small early-stage CIO — not a 24/7 helpline or emergency service. Urgent clinical questions belong with your medical team (or 999 / NHS 111 in an emergency).

Email info@fightingbattendisease.org with the subject line Complaint. We aim to acknowledge and respond within a few working days. More on Governance.

No. Registration means we are a registered charity. It does not mean the Charity Commission endorses our appeals or activities. You can look us up on the Register of Charities (1219714).