Atacsia a Fl l Ataxia arKI me (CK) 1184030)
Ann￿1 RekN)rt 2024- 2025
A small charity based In West Wales, estsblished by a few patients, ofthts rdre disease. COMI￿ together and sharin
the patlents exFerieft￿, ol living wrth this"Life limitir< health condttion.
Focusing on Ataxia arKI associated rnre diseases and mcvement di50rder& Alk)winE us to catsrfor a wider patlent
communrty. who mtght feel isolated. wkh a health comlition that is gener41ty un-heard of.
We alm to Ixiryson* •xder. tothe lack oforder.
Events lon-IlnÈl 72+
Meetings IF2n 4 (Wirtuafj 5
c0Frtrib￿e to s￿ak1Th￿ atvirtual events 3
Indeed We had a good [￿eSenCe Jt augural Swansea Rare Diwse Study Day, speaking wfith Medical students
Suppty text for media artiths three tlmes
Display/5tand at 3 events
Interview4 volunteers. leadingto hostFn8 2 volunteers during the year ladthng to our social medla presence).
Invited to UK'S p￿m￿r G￿0M1t saen￿ e*rt The Festival ofGenomics and BioDats. In London (Plus, being
invited tjack in January the followir8 year,
Our trustee and hi5 wiFe, continue to make amazirg links with other patient ad¥ocates. and other organisations,
contributing to. and, corhveying the pat*Tht5 per5Wive, inctuding many creatfve writing and videos, poems.
tx)dcasts and speaktng as patientadvocates to many or8anisatw)n
Indeed, Louise. is quite an Ambassador, having had a ￿0k* published. from which she reads excepts, from, at many
Spoken Wordl open mic l. linduding at a book festival),events. Indeed at one event Louise got chatting to
"Rappe¢ who made up a few Ilnes to add to his perfomiarKe durirg the wodd renown AbeT8avenny Writing
Festival I
This cortin￿$ oUr"MissK￿. to raise awareness of Ataxia. Neurok￿Y. and a w&tlve. patSent expertence, outlook.
Public liability I￿vrar
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2.37
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19.42
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143.86
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Total
34&15 >>>> MINLiS
561.65
End
213.5

Atacsia a Fi l Atsxia and me {CIO 11840301
Annual Report 2024. 2025
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