| ~ | e | ~ | ~ | ~ | ~ | ~ | ~ | ~ ~ | ||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Unrestricted | Restricted | Endowment | ||||||||||
| Detaiis | funds | funds | funds | |||||||||
| to nearest | F | to | nearest 2 | to nearest | f | |||||||
| B$ Cash | funds | |||||||||||
| Total | cash funds | |||||||||||
| (agres | balances | with receipts and payments | ||||||||||
| account(s)) | ||||||||||||
| Unrestricted | Restricted | Endowment | ||||||||||
| funds | funds | funds | ||||||||||
| Details | to nearest | S | to | nearest 2 | to nearest | K | ||||||
| B2Other | monetary assets | |||||||||||
| Details | Fund to which asset helen s |
Cost (optional) | Current value o tional |
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| B3Investment | assets | |||||||||||
| Details | Fund towhich asset belon s |
Cost (optional) | Current value o tional |
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| B4Assets retained for the | ||||||||||||
| charity's | own | use | ||||||||||
| Fund towhich | Amount due | When due | ||||||||||
| Details | liabil relates |
o tional | o tional | |||||||||
| B5Liabilities | ||||||||||||
| Signed by one or two trustees on behalf of all the trustees |
nature | Name | Date of a roval |
| Objec | ti | v | es and | Acti | viti | es | |
|---|---|---|---|---|---|---|---|
| SORP reference | |||||||
| Summary | ofthe purposes | of | Para 1.17 | 1)To promote and protect the physical and | |||
| the charity as set out | in its | mental health ofsufferers of Mitochondrial |
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| governing | document | Disease through the provision ofsupport, | |||||
| education and practical advice. |
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| 2)To advance the education ofthe public in | |||||||
| general (and particularly among scientists and |
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| health professionals) in all areas relating to |
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| Mitochondrial Disease and to promote research |
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| for the public benefit into the causes and | |||||||
| treatment ofthe disease, with the useful |
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| results ofsuch research to be disseminated. | |||||||
| Summary activities |
of the main in relation to those |
Para 1.17and 1.19 |
Our website continues to serve as a valuable resource for: |
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| purposes for the public benefit, in particular, the activities, projects or services identified in the accounts. |
those affected by mitochondrial disease who can be signposted to many sources of information and support |
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| the general public who may learn more |
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| about the illness | |||||||
| Our principal activities to date undertaken for |
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| the public benefit are: | |||||||
| educating the public by means of handing | |||||||
| out literature, social media and through |
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| publicity about mitochondrial disease |
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| enabling affected families to have | |||||||
| localised 'missions' to raise awareness and |
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| funds for research | |||||||
| the granting offunds to increase support | |||||||
| and research to find treatment and cures |
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| for everyone impacted by mitochondrial |
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| disease | |||||||
| Statement | confirming | Para 1.18 | The trustees have had regard to the guidance | ||||
| whether | the trustees | have | issue by the Charity Commission on public |
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| had regard | to the guidance | benefit. | |||||
| issued | by | the Charity | |||||
| Commission | on public | ||||||
| benefit |
| Policy on | grant making | grant making | grant making | grant making | Para 1.38 | continue to grant fund through The Lily Foundation in order to benefit from their |
|---|---|---|---|---|---|---|
| established processes of: |
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| ensuring the worthiness ofresearch bids |
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| ascertaining what the mito community |
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| itself wants in the way ofresearch and | ||||||
| support | ||||||
| We will remain open to alternative options |
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| and keep this decision under annual review. |
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| Policy on | social investment | Para 1.38 | ||||
| including | program | related | ||||
| investment | ||||||
| Contributions made by volunteers in both |
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| Para 1.38 | fundraising and assisting operating our charity |
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| Contribution | made by | continue to be invaluable, given we do not |
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| volunteers | employ any staff. | |||||
| Other | ||||||
| Achievements | and Performance | |||||
| SORP reference | ||||||
| We granted f23,237in August 2020through | ||||||
| the leading charity for mitochondrial disease, |
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| The Lily Foundation (TLF)towards a research |
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| Summary of the main achievements ofthe charity, identifying the difference the charity's work has made to |
Para 1.20 | project in Neuropsychiatric and Brain Imaging of Primary Mitochondrial Disease (expected start date Q12021). |
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| the circumstances of its beneficiaries and any wider benefits to society as a whole. |
In addition tothe above, in liaison with TLF, we re-allocated f14,000offunding awarded in 2019previously designated for the 'Oxford |
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| Drug Repurposing' project, as follows: |
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| -f10,000-The RUDY Study, a platform to | ||||||
| facilitate patient engagement in research. |
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| This funding will enable mitochondrial disease |
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| patients to be included (expected start date |
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| Sept 2020) | ||||||
| —f4,000-Added to the Neuropsychiatric and |
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| Brain Imaging of Primary Mitochondrial Disease project, bringing total tof27,237 |
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| At the outset ofthe pandemic, we re-assigned |
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| perishable donated goods we could no longer |
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| use in tombolas etc into 'Hug Bundles'. Over | ||||||
| M individuals and families affected by |
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| mitochondrial disease received them. |
| We created our new website launched in May |
We created our new website launched in May |
|---|---|
| in line with our re-brand of2019.It is now | |
| considerably more impactful and easier to |
|
| navigate for the general public, supporters |
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| and those impacted by mito. It also enabled |
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| us to host an online shop launched in |
|
| November, selling merchandise. |
|
| As well asthe shop, other new income | |
| streams have been developed, in particular |
|
| online ones: | |
| Shopping commission sites: Amazon |
|
| Smile 8 Give As You Live. Small amount | |
| generated to date, but large growth | |
| potential. | |
| Facebook fundraising was finally |
|
| enabled in February 2020and generated |
|
| E3.6k. | |
| We have developed Ebay and Facebook |
|
| Marketplace donations and sales- |
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| combined these brought in a retail total |
|
| ofE1.1k. | |
| We began running atombola stall on |
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| Brighouse outdoor market in late |
|
| September, once pandemic restrictions |
|
| allowed. | |
| We welcomed 3patrons —Edmund Thornhill, |
|
| Neil Hurst and Nick Powell from the worlds | of |
| business, entertainment and sport |
|
| respectively. | |
| The charity has launched five further localised |
|
| missions centred around an individual mito |
|
| sufferer(s) - empowering their families, |
|
| friends and communities to raise awareness |
|
| and funds for research tothe extent they | |
| wish, and are able. Despite the limitations | of |
| the pandemic, income from missions |
|
| (excluding the original, Emma's) has risen | |
| from f125in 2019to E3k in 2020. | |
| Just as importantly, we have facilitated and |
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| encouraged liaison and support between our |
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| missionees. Friendships are being formed and |
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| a sense ofempowerment reported by some |
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| ofthose running their own missions from |
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| feeling a 'part ofthe solution'. | |
| Due to the tremendous voluntary support we |
|
| receive, our annual administration expenses |
| Statement expiaining the policy for holding reserves stating why they are held |
Statement expiaining the policy for holding reserves stating why they are held |
Statement expiaining the policy for holding reserves stating why they are held |
Statement expiaining the policy for holding reserves stating why they are held |
Statement expiaining the policy for holding reserves stating why they are held |
Statement expiaining the policy for holding reserves stating why they are held |
Statement expiaining the policy for holding reserves stating why they are held |
Para 1.22 | We do not have a reserves policy at this time and do not consider that our financial position requires one. |
|---|---|---|---|---|---|---|---|---|
| Amount of | reserves | held | Para 1.22 | None | ||||
| Reasons | for holding | zero | Para 1.22 | We have funds which will already enable us to | ||||
| reserves | grant fund next year. We have no expenditure | |||||||
| to which we are committed. We will not grant |
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| out any funding which would take us anywhere |
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| near a nil balance. | ||||||||
| Details offund materially | in | Para 1.24 | None | |||||
| deficit | ||||||||
| Explanation | ofany | Para 1.23 | None | |||||
| uncertainties | about | the | ||||||
| charity continuing | as | a going | ||||||
| concern | ||||||||
| Additional | information | {optional) | ||||||
| You ma | choose | to | include further statements | where relevant about: |
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| Our normal, principal sources offunding were |
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| The charity's principal sources offunds (including |
Para 1.47 | badly impacted by the covid-19 pandemic- fundraising from events and public donation through collections. |
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| any fundraising} | ||||||||
| Events either organised by ourselves or others |
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| were almost all cancelled from March, and | ||||||||
| huge detrimental effect on collecting cans, |
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| sponsored events etc. Having been on track to raise f50k in 2020the cancellation ofmost |
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| activity meant this was no longer achievable. | ||||||||
| As listed previously, we put focus on building |
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| new income streams online to help mitigate | ||||||||
| this. In the event therefore, we were pleased to raise f27.6k. |
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| We are aware that this was largely due toour | ||||||||
| largest ever single donation of610k in January | ||||||||
| 2020, and grateful that this came in a very | ||||||||
| opportune year when other sources offunds |
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| were denied to us. | ||||||||
| Investment | policy | and | ||||||
| objectives including any social investment policy |
Para 1.46 | |||||||
| adopted | ||||||||
| The principal risk remains our reliance ofthe |
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| A description risks facing |
of the principal the charity |
Para 1.46 | Chair's voluntary time in a 'CEO' type role to move the charity forward. |
| Description of charity's |
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|---|---|---|---|---|---|
| trusts: | |||||
| Type ofgoverning document |
Para 1.25 | Trust Deed | |||
| ';trust deed. ro 'Gi chef"FBI"3 | |||||
| How is the charity | Para 1.25 | Charitable | Trust | ||
| constituted? | |||||
| (B.g un!ncoI pcrated | |||||
| associatIon. ClQ& |
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| Trustee selection methods | Para 1.25 | Trustees appoint any new trustees as per Trust | |||
| including details ofany |
Deed document | ||||
| 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: | |||
| Policies and procedures | |||||
| adopted for the induction |
and | ||||
| training oftrustees |
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| The charity's organisational structure and any wider |
Para 1.51 | ||||
| network with which the |
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| charity works | |||||
| Relationship with any related |
Para 1.51 | ||||
| parties | |||||
| Other |
| ofthe charity trust | ees who manage | the charity | |||
|---|---|---|---|---|---|
| Trustee name | Office (ifany) | Dates acted ifnot for whole ear |
Name to a |
ofperson (or body) entitled oint trustee ifan |
|
| Christine Beal |
Chair | ||||
| Joanna Flynn |
Secretary | ||||
| Bethany Ellis |
Treasurer | ||||
| Sophie Whittaker | |||||
| Christopher Appleby |
| Name oftrustees holding |
title | to property belonging to th |
to property belonging to th |
e charity |
|---|---|---|---|---|
| Trustee name | Dates acted ifnot for whole | ear | ||
| Funds held as custodian | trustees on behalf ofothers | |||
| Description ofthe assets |
None | |||
| held in this capacity |
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| Name and objects ofthe | None | |||
| charity on whose behalf | the | |||
| assets are held and how | this | |||
| falls within the custodian | ||||
| charity's objects |
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| Details ofarrangements | for | None | ||
| safe custody and | ||||
| segregation ofsuch assets |
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| from the charity's own assets |