OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2020-12-31-accounts

UK Registered Charity, 1137177 A Company Limited By Guarantee

TRUSTEES’ ANNUAL REPORT 31 December 2020

TRUSTEES’ ANNUAL REPORT 31 December 2020

The Trustees of the Myotubular Trust take pleasure in presenting their annual report and the financial statements for the year ended 31 December 2020.

Objects and Activities

The objects of the Myotubular Trust as agreed by the Charity Commission are;

The Trust, its Trustees, staff and many volunteers all focus on five outcomes to enable the achievement of these objectives:

  1. Bringing families together

  2. Promoting and funding international research

  3. Sharing knowledge

  4. Promoting innovative thinking and collaboration

  5. Working with our extended families.

We bring about the public benefit required of all charities, by the activities of:

Myotubular Myopathy and Centronuclear Myopathy

Myotubular myopathy is a rare and extremely life-threatening muscle condition, which causes profound muscle weakness, usually from birth. It is one of a group of conditions called centronuclear myopathies – called this because under a microscope the nucleus of the muscle cell of someone affected is in the centre, rather than at the edge of the cell.

These conditions are genetic in inheritance. The gene mutation for x-linked myotubular myopathy is carried on the x chromosome (xlmtm), and is the most common form, affecting (mainly) boys. They usually do not survive their babyhood – the statistics have been under review in the last few years and the current view is that 50-75% die in their first year, and very few make it to adulthood.

Even rarer genetic forms, either dominant or recessive in inheritance, can affect both males and females, boys and girls and are generally milder in severity, although not always. The terms myotubular and centronuclear myopathy both describe ‘our’ condition.

Children and adults with myotubular myopathy often require vigilant nursing care, ventilators to breathe, power wheelchairs to get around, and are usually fed via a tube into the stomach. Carrier females, and those affected by some of the rarer forms which can manifest in adult life, may develop muscle weakness and problems with eating and drinking; walking and movement; muscle fatigue and susceptibility to respiratory weakness and associated infections.

In 2020, three young boys who were taking part in the gene therapy trial for x-linked myotubular myopathy tragically died. We would like to take this opportunity to extend the deepest sympathies of the Myotubular Trust to their families and those who loved and took care of them.

1

Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

Impact of COVID-19: Uncertain times

The impact of the global pandemic on the myotubular and centronuclear myopathy patient community was undoubted. This group of patients was identified as ‘ at risk of severe illness if they catch Coronavirus’ and were generally advised to shield. The effect of this new virus on those with a neuromuscular condition was of course unknown at the outset and it was a hugely concerning time. Happily, the severity of the disease did not seem to be worsened for our group of patient and we did not experience an increased death rate due to Covid19.

The initial NHS response in the UK to our patients and families regarding advice was very thorough. Families and individuals felt that they were provided with good signposting and helpful information around shielding, accessing emergency food and medicines.

However, there were a myriad of other ways in which the myotubular and centronuclear myopathy patient and family community were affected by the pandemic in 2020 including;

“We lost a few nurses due to COVID related complications in their own lives. So now I step in to fill the gaps, and lack of sleep has been a big issue in terms of holding it together.”

“My son was happy staying home during lockdown, and we have struggled getting him out and about since - he wants to stay home and do home schooling and play with his Wii. His big sister struggled going back to work and had big anxieties about bringing Covid home to her brother. I had to quit my job because of fear of getting Covid and bringing it home.”

“My husband and I got Coronavirus at the same time, and I was so scared that my son’s carers would walk away. But actually, they were amazing and increased their working hours.”

The Myotubular Trust responded to the pandemic related needs of our community by:

2

Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

___________

Achievements and Performance

Myotubular Trust is now 15 years old, and we are gratified to find that we continue to make a real and meaningful difference, even in remarkably unprecedented times. There is clearly a very useful role for a disease specific research funder in the world of rare disease, along with a tangible need to support patients and families

The Trust was established in 2006 by two parents of boys with myotubular myopathy, to raise research funds. We had found that there was no other way for passionate parents to ring-fence money to fund research into a treatment or cure for this condition, even though we did at the time approach some larger charities for whom we had hoped to fundraise. We also realised very quickly that it was essential to support the profile of the condition within the neuromuscular research community – to compete for brains and innovative ideas – and to support those living with, and bereaved by, myotubular myopathy.

When Myotubular Trust was established, we hoped to be able to fund one or two substantial pieces of research. We hoped that we would help establish proof of principle in one or two key areas, perhaps fund research to start to answer certain important unknowns and ‘compete for brains’ in a field where it was clear that breakthroughs were on the horizon.

Little did we realise that the Trust would still be a viable fundraising and funding resource 15 years later; how we would be the charity that funded the proof of principle research that led to the first ever clinical trial for x-linked myotubular myopathy; how many different and fundamental research possibilities would open up; how many families would come together to provide support for each other; how much we would see myotubular and centronuclear myopathy push ahead of other rare neuromuscular diseases in bringing research to pre-clinical studies and clinical trial; and finally …how we would see the charity and community through a global respiratory pandemic.

Since founding 15 years ago…we have:

  1. Raised £2.4M , through family-led fundraising, networks and relationships.

  2. Made 16 research grants to researchers in world class laboratories, with the support of a highly regarded Scientific Advisory Board.

  3. Funded the proof of principle project for gene therapy that led to the first ever clinical

  4. trial for myotubular myopathy which began in the autumn of 2017.

  5. Funded other proof of principle projects that are on track to lead to clinical trials.

  6. Funded two research grants that contributed to the discovery of two new genes

  7. implicated in centronuclear and myotubular myopathy.

  8. Hosted five family conferences , bringing together affected individuals and families, researchers, clinicians, and other health professionals, and arranged more family meetings by Zoom during the pandemic with global experts and scientists.

  9. Created the first disease specific international Patient Registry to gather vital information on the condition and funded its migration to the stability and credibility of a university setting.

  10. Sponsored a Standards of Care meeting for clinicians, patients and their healthcare professionals at the Royal Brompton Hospital.

  11. Participated in a European Neuromuscular Centre workshop on Mouthpiece Ventilation, resulting in the publication of MPV international best practice guidelines .

  12. Created a great band of committed supporters , raising funds for us year on year.

  13. Developed strategic relationships with key stakeholders in the fields of neuromuscular disease, rare disease, EU and UK regulatory bodies, and highly regarded wellestablished UK children’s charities.

  14. And most importantly, brought together more and more families affected by myotubular and centronuclear myopathy, supporting the Trust’s fundraising and each other’s lives.

3

Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

___________

Family Support in 2020

Advocacy and Family Support

We were very fortunate that since 2016-2017 we have received annual grants from IGY Foundation to enable us to support families and to help with professional advice on respiratory issues, ventilatory support, applications for home services and adaptations, school support etc. This service was invaluable in the challenging year 2020.

As a reminder of why this support is needed, myotubular myopathy is so rare that usually the child's GP or doctor will never have come across the condition before - making being diagnosed a frightening and bewildering experience for all concerned. Being hurled suddenly and without warning into a world of medical jargon, high level nursing, complex healthcare and social care systems, families and individuals are grateful to know they are not alone, and that we, and others like them, are willing to share the burden of responsibility by helping them understand their experiences and to navigate the systems. For example:

The need caused by a lack of understanding of the impacts of such a rare, devastatingly life threatening condition re-emerges many times throughout a patient’s life - and more often at times of change, such as when there is a physical change (such as losing the ability to walk or scoliosis), during periods of ill health, when moving home or into a new phase of education or work, around family planning, or practical day-to-day living issues. So often experiences and information signposting are needed again and again by families.

We were very glad to be able to provide this support to many families again in 2020 despite the challenges of a global pandemic.

4

Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

Case study

The advice given to the parents of a 2 year old boy with myotubular myopathy has had a huge influence on how they manage his airways to keep him safe. In the early days, when the baby was unable to cope with the volume of secretions and he wasn’t strong enough to swallow, we drew his parent’s attention to nasal suctioning, chest physiotherapy and nebulisers. This was at a point when their hospital was not putting these steps in place as they were unfamiliar with the condition. Myotubular Trust also advocated for the family to use a cough assist device, which is now an integral part of the boy’s physiotherapy routine - this has strengthened his cough and improved his ability to clear his secretions independently. This is all second nature to his parents now, and together with the night-time nursing care package that the Trust helped to put in place, his parents believe that the airways management regime is the reason their son has avoided chest infections and lengthy hospital admissions in the first two years of his life. They say that it is also why, at the age of 3, he is strong enough to attend nursery, just like any other little boy his age.

“ Myotubular Trust has been there, and will continue to be there, at every stage of this journey we are on, to support us and improve his life experience and that is incredibly comforting and reassuring to us as parents. I really couldn't ever state this enough!!’

Research in 2020

The Myotubular Trust was set up to raise funds to leverage the research findings being made, and techniques being trialed in ‘more common’ muscle diseases. The ultimate goal of the Trust is to invest in a diverse number of routes to a cure for all genetic forms of myotubular and centronuclear myopathy, or in treatments that alleviate the most severe symptoms. This we do by investing in the very best translational research, peer reviewed to the highest international standards, supported by an eminent Scientific Advisory Board.

Proof of principle funding

The founding vision for the Trust was to fund proof of principle projects that would not normally be funded by public or industrial funding. For rare diseases it can be incredibly difficult to finance this vital stage of research, but once proof of principle is established for a potential treatment, then other larger charities and organisations are more likely to provide funds for the next stage. We had great hopes that this strategy might make some difference for our very rare disease, and we are gratified that all three current promising clinical trials for treatments have had significant early-stage funding from Myotubular Trust.

5

Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

___________

Clinical trials

Gene therapy

This virus mediated gene therapy was being funded by the Trust as far back as our first grant award in 2009 to Dr Ana Buj Bello at Genethon, Paris. Dr Buj Bello established proof of principle for this gene therapy, and with the success of her research funded by the Trust (grants in 2009 and 2012), other funders subsequently joined in too. “ It is the result of perseverance and joined forces. Thanks a lot for your support all along these years, your contribution has been crucial, you can be proud of it” Dr Buj Bello

This trial reached its 3 year mark in 2020, but tragically and devastatingly 3 young boys died, probably due to liver complications. The trial was put on hold by the FDA in the US for most of 2020, and after some months of reporting by the sponsoring company (previously Audentes Therapeutics, now part of Astellas Gene Therapies), the hold was lifted again in December. In 2021 it is expected that dosing will resume, at a lower dose than that given to the deceased boys.

Antisense Therapy

The 3year grant, “Reducing DNM2 as a novel therapeutic target for CNM”, made by the Myotubular Trust to Jocelyn Laporte’s team at the laboratory IGBMC in 2016 “ validated a deliverable approach”, and formed a major contribution to the pre-clinical studies preparing the way for a clinical trial to test this approach in human ~~s~~ who have either the x-linked MTM or Dynamin 2 form of the condition.

In 2019, Dynacure, a start-up biotech based in Strasbourg, secured approval for a clinical trial for those affected by the MTM1 and DNM2 genes, and this trial was due to begin in 2020. One patient began treatment, but unfortunately the pandemic put the trial on pause for a number of months. However, by the end of 2020 recruitment was restored, and initial dosing began in several countries in Europe, including in the UK.

Drug repurposing

2020 was the third year of our 3-year drug repurposing research grant to Dr James Dowling at the Hospital for Sick Children, Toronto, Canada. One of the aims of this grant was to determine the optimum dosage of Tamoxifen to take to clinical trial. By the end of 2020 this work had progressed successfully enough for clinical trial planning to be well advanced in sites in Canada, the US, and the UK (see grant announcement below).

Drug repurposing has the benefit of bringing drugs that have already been safely taken by thousands, maybe millions of other people to a new group of patients. As safety has already been established, the length of clinical trial required to test such a drug for a new patient group, and the proof required for the regulatory authorities, can be much reduced. Patients, particularly those already living with a high degree of vulnerability, may also feel a lot more confidence and faith in a known drug.

This now brings the number of clinical trials for centronuclear and myotubular myopathy to three , all of which have had substantial investment and commitment from Myotubular Trust. On the road to all of these clinical trials, the role of the Trust was to fund the proof of principle/validation work being proposed by these outstanding researchers, paving the way for companies like Audentes (now Astellas Gene Therapies) and Dynacure, or academic institutions such as Sick Kids Toronto and Great Ormond St. London to take them to clinical trial. That funding makes a fundamental difference, and we are immensely grateful to all our supporters who have made this possible.

6

Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

___________

Grant awards – 2020

In 2020, despite the challenging fundraising and financial position of charities throughout the UK, we were in the fortunate position to be able to make two research grants:

Tamoxifen clinical trial

This grant, which is co-funded with Great Ormond Street Hospital Children’s Charity, is for the UK arm of a clinical trial to test how well the well-known oncology drug, Tamoxifen, works in improving motor and respiratory function in patients with myotubular myopathy. The trial will be led by Dr Giovanni Baranello, and Professor Francesco Muntoni at the UCL Great Ormond Street Institute of Child Health. It will involve children affected by x-linked myotubular myopathy in the UK and is part of the global repurposing trial from the work the Trust funded with Dr Jim Dowling at Sick Kids Canada. The global trial is being led by Dr Dowling.

The mTORC pathway

Our second grant award of 2020 went to Dr Karim Hnia at the world-renowned French institute, INSERM, investigating the question “Is the mTORC1 pathway a route to treatment in x-linked myotubular myopathy?”

mTORC1 is a master regulator of muscle growth – from the early steps of muscle cell differentiation in the womb, to the work of muscles in adult life. The work of Dr Hnia’s laboratory has shown that mTORC1 is ‘overactivated’ when XLMTM is present. What makes this a very interesting project (apart from the highly positive peer review) is that through other diseases there are a number of drugs already licensed to regulate mTORC1 levels.

Another important goal in being a source of funding for this condition was to inspire others in the field to work on myotubular and centronuclear myopathy in order to develop a sustainable legacy of research for our condition. Fourteen years later we are delighted to be supporting a committed community of researchers with an interest in myotubular myopathy, undertaking world-class research projects.

We are also immensely grateful to our Scientific Advisory Board (SAB) for their time and their highly impressive expertise and understanding. The calibre of applications the Myotubular Trust attracts is due in no small part to the reputation of this group of scientists.

The academic members of the SAB are:

We are indebted for the guidance they gave to the Myotubular Trust throughout the year. We are also very grateful to the lay members of our SAB for their time. The lay members include parents, bereaved parents and patients.

7 Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

___________

Partnerships

With the goal of collaboration and innovation in mind, we continued in 2020 to work with key stakeholders in the research, children’s charity, industry, regulatory and myotubular myopathy communities:

Given our relatively small size, these partners are crucial for us and we value their time and commitment immeasurably, and hope we can continue to be excellent partners with them.

8

Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

___________

Financial Review

Sustainable Fundraising – the Highlights of 2020

In 2020 the Trustees were gratified that we were able raise £131,865, despite the remarkably unprecedented times impacting charity fundraising. Our continued revenue stream is testament to the strength of support that a small number of affected families enjoy in their communities – the ‘ripple effect’ from each child into an extended network of supporters has been so critical to our growth and stability.

Despite the year that was in it, our families were able to organise

We also had an increase in standing orders during 2020, probably as people realised how difficult it was for charities during social distancing and lockdowns. Finally, we were incredibly fortunate that JCW Resourcing, an IT recruitment company, chose the Myotubular Trust as the recipient of their annual January fundraising event, in recognition of the lovely son of one of their colleagues. This provided us with a very welcome £30K+ start to our fundraising in 2020 - little did we know then how vital that would be.

We were also lucky to be chosen by the charity, Global’s Make Some Noise for emergency Covid funding. Their process was very thoughtful and considerate, and we really felt that there were organisations out there rooting for small charities like ours.

We would also like to extend our grateful thanks to the IGY Foundation for their continued support of our family support work – we are truly grateful to them for both the funds, and for the interest in, and understanding of this work we do.

Fundraising Practice

The Trustees take their responsibilities to fundraising very seriously. To that end, we ensure that we adhere to the Fundraising Regulator’s code of best practice and meet the Charity Commission’s six principles of charity fundraising. For us, at our size, the areas of best practice we pay attention to are;

We adhere to the Data Protection Act 2018, General Data Protection Regulation (GDPR) and pay data protection fees to the Information Commissioner’s Office (ICO).

9

Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

Reserves Policy

The Trustees sole aim in expending cash reserves is to fund research into a cure or treatment for myotubular myopathy and they do not consider it appropriate to hold long-term reserves.

However, as each research project is granted, those funds will be held available to be released in staged payments, and new awards will only be made if the full cost of the relevant research project is available, and available to be ringfenced. This prudent financial policy is appropriate given our size and specialism.

This policy meant that instead of being hit by a cash flow crisis in 2020, and the even worse possibility of not being able to pay for committed research grants, we were even able to announce new grant awards in 2020 and prepare to announce another grant call for 2021.

Plans for future periods

The Trust aims in 2021 to:

10

Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

Reference and administrative details of the Charity, its Trustees and advisors The following were Trustees of the Trust and held office during the above period: Patricia Allen Gary Browning Greg Fowler Andrew Lennox Anne Lennox James Rosling

Trustees are appointed by the board of trustees and serve for three years (five years for Anne Lennox) after which period they may put themselves forward for re-appointment. The trustees meet three times per annum.

Office Myotubular Trust - charity registration number 1137177

15a Barnard Road London SW11 1QT

Bankers CAF Bank Limited Kings Hill West Mailing Kent ME19 4JG

The Co-operative Bank PO Box 250 Skelmersdale WN8 6WT

Independent Examiner Michael Stone MA ACA Jamieson Stone LLP Windsor House 40/41 Great Castle Street London W1W 8LU

Structure, Governance and Management

Constitution

The Myotubular Trust is an incorporated charity limited by guarantee and its governing document is the memorandum and articles of association dated 21 May 2010. The memorandum and articles of association has the same objects as that of the Trust Deed dated 26 January 2006 of the unincorporated charity. The Trust obtained charitable status under Section 4 of the Charities Act 1960 from the Charity Commission on 19 April 2006 under registration number 1113809 and following incorporation on the 20th May 2010 was registered with the Charity Commission with registration number 1137177, and with Companies House with company registration number 7260229.

Organisation and the Trustees

In selecting individuals for appointment, the trustees will have regard to the skills, knowledge and experience needed for the effective administration of the charity.

11 Myotubular Trust

TRUSTEES’ ANNUAL REPORT 31 December 2020

___________

Trustees' responsibilities statement

The Trustees (who are also directors of The Myotubular Trust for the purposes of company law) are responsible for preparing the Trustees' Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards.

Company law in England and Wales requires the Trustees to prepare financial statements for each financial year in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards and applicable law). The financial statements are required by law to give a true and fair view of the state of affairs of the charity and of the income and expenditure of the charity for that period. In preparing these financial statements the trustees are required to:

The trustees are responsible for keeping accounting records, which disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Companies Act 2006. They are responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Risk management

The trustees have examined the strategic, business and operational risks, which the charity faces and confirm that systems have been established to enable regular reports to be produced so that the necessary steps can be taken to lessen the risks.

12

Myotubular Trust

INDEPENDENT EXAMINER’S REPORT FOR THE YEAR ENDED 31 DECEMBER 2020

Respective responsibilities of trustees and examiner

The trustees (who are also the directors of the company for the purpose of company law) are responsible for the preparation of the accounts. The charity’s trustees consider that an audit is not required for this year under section 144 of the Charities Act 2011 (the Charities Act) and that an independent examination is needed.

Having been satisfied that the charity is not subject to audit under company law and is eligible for independent examination it is my responsibility to:

Basis of independent examiner’s statement

My examination was carried out in accordance with the General Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and the seeking of explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently, no opinion is given as to whether the accounts present a ‘true and fair view’ and the report is limited to those matters set out in the statement below.

Independent examiner's statement

In connection with my examination, no matter has come to my attention:

Michael Stone MA ACA Jamieson Stone LLP Windsor House 40/41 Great Castle Street London W1W 8LU

20 August 2021

Myotubular Trust

STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2020

Total Total
Unrestricted Designated Restricted Funds Funds
Funds Funds Funds 2020 2019
£ £ £ £ £
INCOMING RESOURCES
Donations and grants 85,628 25,000 - 110,628 170,147
Fundraising activities 20,635 - - 20,635 47,994
Interest received 1,602 - - 1,602 1,468
---------- ---------- ---------- ---------- ----------
Total incoming resources 107,865 25,000 - 132,865 219,609
---------- ---------- ---------- ---------- ----------
RESOURCES EXPENDED
Research - 133,306 - 133,306 79,500
Fundraising costs 345 - - 345 2,953
Staff costs 50,765 - - 50,765 51,020
Training - - - - 81
Advocacy - 12,187 - 12,187 13,891
Family Conference costs - - - -
Accountancy & payroll 110 - - 110 280
Independent examiner 1,000 - - 1,000 1,000
Legal & professional - - - -
Trustee’s indemnity 966 - - 966 865
Travel costs 216 - - 216 1,403
Printing & stationery 72 - - 72 337
Postage & telephone 56 - - 56 140
Subscriptions 260 - - 260 160
Web & IT costs 688 - - 688 625
Bank charges 300 - - 300 497
---------- ---------- ---------- ---------- ----------
Total resources expended 54,778 145,493 - 200,271 152,752
---------- ---------- ---------- ---------- ----------
Net incoming/(outgoing) resources
53,087		 (120,493) - (67,406) 66,857
Transfers between funds (51,194)
51,194		 - - -
---------- ---------- ---------- ---------- ----------
Net movement in funds 1,893 (69,299) - (67,406) 66,857
Total funds brought forward 4,069 358,340 - 362,409 295,552
---------- ---------- ---------- ---------- ----------
Total funds carried forward 5,962 289,041 - 295,003 362,409
---------- ---------- ---------- ---------- ----------

All gains and losses arising in the year are included within the statement of financial activities

The accompanying notes form part of these financial statements

Myotubular Trust

BALANCE SHEET AS AT 31 DECEMBER 2020

2020 2019
£ £ £ £
CURRENT ASSETS
Debtors and prepayments 26,275 1,561
Cash at bank and in hand 270,455 364,280
---------- ----------
Total current assets 296,730 365,841
---------- ----------
CREDITORS
Amounts falling due within one year 1,727 3,432
---------- ----------
Net current assets 295,003 362,409
---------- ----------
NET ASSETS 295,003 362,409
---------- ----------
FUNDS OF THE CHARITY
Restricted funds - -
Unrestricted general funds 5,962 4,069
Unrestricted designated funds 289,041 358,340
---------- ----------
295,003 362,409
---------- ----------

The company is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the year ended 31 December 2020 and the members have not required the company to obtain an audit of its financial statements for the year ended 31 December 2020 in accordance with Section 476 of the Companies Act 2006.

The directors acknowledge their responsibilities for: (a) ensuring that the company keeps accounting records which comply with Sections 386 and 387 of the Companies Act 2006 and (b) preparing financial statements which give a true and fair view of the state of affairs of the company as at the end of each financial year and of its profit or loss for each financial year in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the requirements of the Companies Act 2006 relating to financial statements, so far as applicable to the company.

The financial statements have been prepared in accordance with the provisions of Part 15 of the Companies Act 2006 relating to small companies.

The financial statements were approved by the trustees on ………………………… and signed on 20th August 2021 their behalf:

………………………… ………………………… Andrew Lennox James Rosling Chairman/Trustee Treasurer/Trustee

The accompanying notes form part of these financial statements

Myotubular Trust

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2020

1. BASIS OF PREPARATION

The financial statements have been prepared on the accruals basis of historic cost in accordance with the Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) and the Companies Act 2006 and the Charities Act 2011.

2. ACCOUNTING POLICIES

Incoming Resources

Incoming resources are recognised when the charity becomes entitled to the resources, the trustees are virtually certain they will receive the resources, and the monetary value can be measured with sufficient reliability.

Where incoming resources have related expenditure (as with fundraising or contract income) the incoming resources and related expenditure are reported gross in the Statement of Financial Activities.

Grants and donations are recognised when the charity has unconditional entitlement to the resources.

Incoming resources from tax reclaims are recognised at the same time as the gift to which

they relate.

Contractual income and performance related grants are recognized once the related goods or services have been delivered.

Investment income is included in the accounts when receivable.

Resources expended

Resources expended are recognised as soon as there is legal or constructive obligation committing the charity to pay out resources.

Resources expended include attributable VAT which cannot be recovered.

Funds

Restricted funds are funds to be used for specific purposes as declared by the donor.

Designated funds are monies set aside from general funds and designated for specific research awards by the trustees.

Unrestricted funds are donations and all other incoming resources without a specified purpose and which are available as general funds.

Myotubular Trust

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2020

3. TAXATION

The Myotubular Trust is a registered charity and is not liable to Income Tax or Corporation Tax on income derived from its charitable activities.

4. RESOURCES EXPENDED

4. RESOURCES EXPENDED
2020 2019
£ £
Research 133,306 79,500
Independent examiner’s remuneration 1,000 1,000
---------- ----------
The principal research grants awarded during the year were as follows:
2020 2019
£ £
Sick Kids Canada - Dr Dowling 72,000 72,000
Sparks Charity GOSH 58,108 -
Taurus Tide 3,198 -
Newcastle University re Treat NMD - 7,500
---------- ----------
5. DEBTORS AND PREPAYMENTS
2020 2019
£ £
Gift Aid 133 175
Prepayments and accrued income 26,142 1,386
---------- ----------
26,275 1,561
---------- ----------
6. CREDITORS FALLING DUE WITHIN ONE YEAR
2020 2019
£ £
Accruals 1,727 3,432
---------- ----------

Myotubular Trust

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2020

7. RELATED PARTY TRANSACTIONS

There were no related party transactions by the trustees for the year (2019: None).

One Trustee received remuneration of £20,000 during the year ending 31 December 2020 (2019: £20,000).

The trustee's remuneration and other administration costs are funded from unrestricted corporate and charitable donations, which were specifically raised for that purpose.

Myotubular Trust