## ## ## ## ||SORP reference||| |---|---|---|---| |Summary of the purposes
of the charity as set out in|Para 1.17|Relief of persons suffering from
hypothalamic hamartoma ("HH")by|| |its governing document||increasing awareness, promoting|| |||research and the provision of|| |||information|| |Summary of the main|Para 1.17 and
1.19||Outreach to| |activities in relation to those|||patients/caregivers;| |purposes for the public|||Presenting to medical| |benefit, in particular, the|||professionals;| |activities, projects or||(iii)|Organising and fundraising| |services identified in the|||for an international| |accounts.|||symposium on HH| |Statement confirming|Para 1.18|Yes.We have read it, and had proper|| |whether the trustees have||regard.|| |had regard to the guidance|||| |issued by the Charity|||| |Commission on public|||| |benefit|||| ## |
ou ma
choose to include fur|
ther statements|where relevant about:|| |---|---|---|---| ||SORP reference||| |||We intend to assist our sister|| ||Para 1.38|organisation (Hope for HH) based in the|| |Policy on grant making||US in raising money for specific
research projects for the benefit of the|| |||HH community. No grant will|be| |||approved without agreement|from the| |||Board of Directors of the US charity and|| |||the trustees of the UK charit|.| ||Para 1.38||| |Policy on social investment|||| |including program related|||| |investment|||| ||Para 1.38||| |Contribution|made|by|Incomefrom|trustees|=|EI,OOO|per| |---|---|---|---|---|---|---|---| |volunteers|||annum||||| |Other|||||||| ## |chievements and Per|formance|| |---|---|---| ||SORP reference|| |||2018-22 we represented patients on a| |||National Policy Group for NHS funding| |||of Laser Ablation for HH, collating a| |Summary of the main|Para 1.20|wide base of evidence and co-authoring| |achievements of the charity,||a detailed submission which resulted in| |identifying the difference the||the NHS approving and fundinq laser| |charity's work has made to||ablation of notjust HH but of other focal| |the circumstances of its||epilepsies.| |beneficiaries and any wider||| |benefits to society as a||2018 to date we continue towork with| |whole.||EpiCARE as patient representatives on| |||behalf of HH patients and also other| |||epilepsy sufferers. We have created| |||EpiCARE endorsed resources on| |||hypothalamic hamartomas for patients,| |||caregivers and healthcare| |||professionals.| |Achievements against|Para 1.41| |---|---| |objectives set|| |Performance of fundraising|| |activities against objectives|Para 1.41| |set|| |Investment performance|Para 1.41| |against objectives|| |Other|| ## |inancial Review|||| |---|---|---|---| |Review of the charity's|Para 1.21|Good. In creditand movingforward will|| |financial position at the end||continue to fundraise|for specific| |of the
eriod||pro•ects.|| |Statement explaining the|Para 1.22|Our policy is not to hold reserves other|| |policy for holding reserves||than to cover running|costs, rather to| |statin
wh
the
are held||fundraise fors ecific|ro•ects.| |Amount of reserves held|Para 1.22|E144,760|| |Reasons for holding zero|Para 1.22|n/a|| |reserves|||| |Details of fund materially in|Para 1.24|None|| |deficit|||| |Explanation of any|Para 1.23|None|| |uncertainties about the|||| |charity continuing as a going|||| |concern|||| ## ## |Structure, Governance|and Manag|ement| |---|---|---| |Description of charity's||| |trusts:||| |Type of governing document|Para 1.25|Trust deed| |(trust deed,
al charter)||| |How is the charity|Para 1.25|Trust| |constituted?||| |(e KJ unincorporated||| |association, CIO||| |Trustee selection methods|Para 1.25|Appointment will be by unanimous| |including details of any||agreement of the current trustees.| |constitutional provisions e.g.||| |election to post or name of||| |any person or body entitled||| |to appoint one or more||| |trustees||| |Additional information(optional)||| |You ma
choose to include further statements||where relevant about:| ## |Charit|name|||Ho
e for H|othalamic Hamartomas UK| |---|---|---|---|---|---| |Other|name the charit||uses||| |Re
istered charit||number||1164565|| |Charity's principal||address||1 Leverett|Grove| |||||Back Lane|| |||||Tibberton|| |||||TFIO 8PX|| ## ## |Names an|d addresses of a|dvisers (Optional information)| |---|---|---| |Type of|Name|Address| |adviser||| |Name of|chief executive or names of senior staffmembers (Optional information)|| ## ## ||||Unrestricted|Unrestricted|Restricted|Restricted|Restricted|Endowment| |---|---|---|---|---|---|---|---|---| ||Categories||funds|||funds||funds| ||||to nearestE||to|nearest E||to nearestE| |Bl Cash funds||Bank accounts||||||| |||Total cash funds||||||| |||(agree balanceswith receipts and payments||||||| |||account(s))||||||| ||||Unrestricted||Restricted|||Endowment| ||||funds|||funds||funds| |||Details|to nearestE||to|nearestE||to nearestE| |B2 Other monetary assets||||||||| |||Details|Fund
asset|to which
belon
s|Cost||(optional)|Current value
o
tional| |B3 Investment assets||||||||| |||Details|Fund
asset|to which
belon
s|Cost||(optional)|Currentvalue
o
tional| |B4Assets retained for the||||||||| |charity's own use||||||||| ||||Fund|to which|Amount due|||When due| |||Details|liabili|relates||o|tional|o
tional| |B5 Liabilities||||||||| |Signed
behalf|by one or two trustees on
of all the trustees|Signature||Print|Name|||Date of
a
roval| |||||||||aku-| # ## ||||Unrestricted|Unrestricted|Restricted|Restricted|Restricted|Endowment| |---|---|---|---|---|---|---|---|---| ||Categories||funds|||funds||funds| ||||to nearestE||to|nearest E||to nearestE| |Bl Cash funds||Bank accounts||||||| |||Total cash funds||||||| |||(agree balanceswith receipts and payments||||||| |||account(s))||||||| ||||Unrestricted||Restricted|||Endowment| ||||funds|||funds||funds| |||Details|to nearestE||to|nearestE||to nearestE| |B2 Other monetary assets||||||||| |||Details|Fund
asset|to which
belon
s|Cost||(optional)|Current value
o
tional| |B3 Investment assets||||||||| |||Details|Fund
asset|to which
belon
s|Cost||(optional)|Currentvalue
o
tional| |B4Assets retained for the||||||||| |charity's own use||||||||| ||||Fund|to which|Amount due|||When due| |||Details|liabili|relates||o|tional|o
tional| |B5 Liabilities||||||||| |Signed
behalf|by one or two trustees on
of all the trustees|Signature||Print|Name|||Date of
a
roval| |||||||||aku-| # ##