Atscsia a Fi / Ataxla and me (CIO 1184030) Annual Report 2022- 2023 A small charity based in West Wales, estsblished by a few patients. of thi5 rare disease, comin8 together and sharin& the patients experience. of living with this"Lrfe limitirf health condition. Focusing on Ataxia and associated rare dlseases and movement dlsorders. Allowing us to cater for a wlder patient community, who might feel isolated, with a health corKlition that Is generally un-heard of. Atsxla Is a Greek word meanln8 Ya¢k of Orde We alm to brln8 some order, to the lack of tyder. Agaln, thls year any physlcal actlvlty was very small. due to the IlegaLy of the Co¥ld19) pandemic. Many events have been provided via on-llne platforms. Although, as we are more of an onllne charity, we were able to utlllse, the advantage of a vlrtual presence, allowln8 us to keep interacting with the community. Durlng thls year the theme for all events. was VIRTUAL {either via Zoom or Mlcrosoft teams). Events lon-line} 144 Meetlngs ContrlbLrte to speakln8, at Ylrtual events 9 Radlo Intervlew I Durlng thls year we took part In fllrnSn8 {wlth BBC Wales) for an article a1ut Ataxia and Health servlces, shown on S4C Televislon, Wales We hosted 2 volunteer5 during the year (adding to our social media presence) This was very advantsgeous during the month of Febnry (Rare disease Day 28 Februaryl Indeed I was very keen and took part In many Wales Gene Part (Genomics) webinars We took part in, the annual fundraising event summer called-at home Super Hero< where artMtie5 could be done"At home". We continue to use the sale of {Plalnl backpacks. for fundraising Our trustee and his wife, continue to make amazing links With other patient advocates, and other organisations, contributing to, and, conveying the patlents perspect5ve. includlng many creative writing and videos. poems, podcast5 and speaking as patient advootes to many organi5ations.
Again we were invited to submit Text to Wales online for a media article Inewspaper and online. We also had an article published in the Mediwales rwletter, for the Global Life Science Industry, Public liability Insurance Markel London Bank 8arclays 20-25-19 Flnancials Amount In FuTra[SI , Lool GNiivd p38e Local Gi¥in8 we Local Gi¥iTrd pa8e Local paee Local p38e Local Givirry pa8e Local Givlr4 page l Local GIVI page Lfxal Gi¥iJw pa8e Lrfal Glvrt pa8e L(Kal Gi¥11 page Loc31 Glvir Local Gmng page local GIVI MLG Grant 133.99 195.94 245.39 68.87 65 37 Get (1 96 149.5 i(M) 14 Webs#e (123) L76 129.46 49.99 IIK>.8 36m 2L
., amazon ' 5A 755 Total
MINL 1334.94 End Atacsla a Fl l Ataxla and me ICIO 11840301 Annual Report 2021-2022 full name Position date ALA NJ TH0&1145 Slgned full name Poslt5on ? kX- ofqothl OA Op& *rekGc q.S,24