61A Great Suffolk Street, London SE1 0BU 020 7803 4800 / Helpline: 0800 652 6352 (Freephone) info@musculardystrophyuk.org www.musculardystrophyuk.org

Patron: HRH The Duke of Edinburgh, KG, KT President: Gabby Logan

Hon Life Presidents: J Alexander Patrick CBE DL, Professor Martin Bobrow CBE FRS FMed Sci and Sue Barker OBE

21 August 2019

Dear Sir or Madam,

I am writing to give you formal notice of our Annual General Meeting which is to be held at the Hotel Sofitel London Heathrow, Heathrow Airport, Terminal 5, London TW6 2GD at 11:15am on Saturday 12 October 2019.

There are nine vacancies on the Board of Trustees and the Board has nominated the following:

Standing for re-election:

∑ Charles Scott∑ Louisa Hill ∑ Robbie Warner ∑ Professor Mike Hanna (for his second term as Chairman)∑ Baroness Celia Thomas MBE∑ Ian Gordon

Further, members are asked to endorse the co-option of Martin Cardoe and Joseph Gordon to serve a three year term as a Trustee.

The notice setting out the agenda with the relevant papers will be sent by email. They are also available via the following link: http://bit.ly/MDUKAGM19. Hard copies are available upon request, please contact Matt Biltcliffe, Executive Assistant on 02078034800 for further information.

Under the Articles of Association, the Board of Trustees may decide how many elected Trustees should be on the Board. This year the Trustees have decided that the most suitable number of elected Trustees for the effective governance of the charity is 13. This means that there will be nine vacancies on the Board at this year’s AGM as Dr Amy Jayne Knight has left the Board after completing two terms of office and Andrew Graham has decided to step down from the Board after completing three terms of office. One further individual has been nominated by members of the Scottish Council and is currently exploring the potential to be co-opted as a Trustee. Every Charity Member is eligible to vote at the AGM.

As the number of candidates does not exceed the number of posts available, there will be no need to hold a ballot at the Annual General Meeting. However, a vote will be held in respect of the nominations of Charles Scott, Louisa Hill and Robbie Warner to be re-elected for a second term; Professor Mike Hanna to be re-elected for a third term (his second term as Chairman); Baroness Celia Thomas MBE and Ian Gordon for a further final term of office after three terms; and to endorse the co-option of Martin Cardoe and Joseph Gordon. They will only be elected if they receive more votes in favour than against.

As a Member of the Charity, you are entitled to appoint a proxy to exercise all or any of your rights to attend, speak and vote at the Annual General Meeting and you will find a proxy form with this Notice of the Meeting. You can only appoint a proxy using the procedures set out on the proxy form attached.

Please note that the deadline for us to receive your proxy form is 11am on 8 October 2019.

Yours faithfully,

Catherine Woodhead Wojtek TrzcinskiChief Executive Company Secretary

Proxy Form for Annual General Meeting of the Muscular Dystrophy Group of Great Britain and Northern Ireland

Please return your completed form to arrive before 11am on 8th October 2019 to: Chief Executive, Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU

or by email to ceo@musculardystrophyuk.org

Please complete this form only if you wish to appoint someone to attend, speak and vote on your behalf at the Annual General Meeting to be held on Saturday 12October 2019.

This form must reach us no later than 11am on Tuesday 8th October 2019 for it to be included in the voting process.

Name of Charity Member(In block letters)Address of the CharityMember

I hereby appoint:(Select one of the below)

® The Chair of the meeting® Mr/Mrs/Ms ………………………………………………………………of [insert address]

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as my proxy to vote for me and on my behalf:(Select one of the below)

® As he/she thinks fit(please sign and date below but ignore the section relating to agenda item 4 below)

® As directed below

Agenda item 4 – Member of the Board of Trustees

If you have selected “As directed below” please tick the boxes below to indicate whether you would like to direct your proxy to vote for or against the appointment of each of the following persons as Trustees, or to abstain.

If you tick more than one box for any person your vote for that person will be invalid.

The legal name of Muscular Dystrophy UK is the Muscular Dystrophy Group of Great Britain & Northern IrelandRegistered Charity No 205395 and Scottish Registered Charity No SC039445

Charity Limited by Guarantee 705357

Agenda item 4 – Member of the Board of Trustees For Against Abstain

(c) Standing for re-election:∑ Charles Scott

(d) Standing for re-election:∑ Louisa Hill

(e) Standing for re-election:∑ Robbie Warner

(f) Standing for re-election:∑ Professor Mike Hanna

(g) Standing for re-election:∑ Baroness Celia Thomas MBE

(h) Standing for re-election:∑ Ian Gordon

(i) Endorse the co-option:∑ Martin Cardoe

(j) Endorse the co-option:∑ Joseph Gordon

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Agenda item 6 – To approve the updates to the Memorandum and Articles of Association

If you have selected “As directed below” please tick the boxes below to indicate whether you would like to direct your proxy to vote for or against the approval of the updates to the Memorandum and Association of Articles, or to abstain.

If you tick more than one box for update your vote for that amendment will be invalid.

Agenda item 6 – To approve the updates to the Memorandum and Articles of Association

For Against Abstain

a) Article 3.3 (Members)b) Article 13.1 (Quorum)c) Article 30.1 and 30.2 (Retirement of Trustees)d) Article 40.1 (A Resolution may be Approved by Signature Without a Meeting)e) Article 44.3 (Meetings of Committees)

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at the Annual General Meeting to be held at the Hotel Sofitel London Heathrow, Heathrow Airport, Terminal 5, London TW6 2GD at 11:15am on Saturday 12 October 2019.

Signed:___________________________________________Date:______________

The legal name of Muscular Dystrophy UK is the Muscular Dystrophy Group of Great Britain & Northern IrelandRegistered Charity No 205395 and Scottish Registered Charity No SC039445

Charity Limited by Guarantee 705357

Notes to Proxy Form

1 As a member of Muscular Dystrophy UK you are entitled to appoint a proxy to exercise all or any of your rights to attend, speak and vote at a General Meeting of Muscular Dystrophy UK. You can only appoint a proxy using the procedures set out in these notes.

2 Appointment of a proxy does not preclude you from attending the meeting and voting in person. If you have appointed a proxy and attend the meeting in person, your proxy appointment will automatically be terminated.

3 A proxy does not need to be a member of Muscular Dystrophy UK but must attend the Meeting to represent you. To appoint as a proxy a person other than the Chairman of the meeting, set out their name and address where marked.

4 If you sign and return this proxy form with no name set out where shown, the Chairman of the meeting will be deemed your proxy. Where you appoint as your proxy someone other than the Chairman, you are responsible for ensuring that they attend the meeting and are aware of your voting intentions.

5 If you wish your proxy to speak on your behalf at the Meeting you will need to appoint your own choice of proxy (not the Chairman of the meeting) and give your instructions directly to them.

6 If you do not give your proxy an indication of how to vote on any resolution your proxy will vote (or abstain from voting) as he or she thinks fit in relation to any other matter which is put before the Meeting.

7 To appoint a proxy using the proxy form, the form must be:∑ Completed and signed;∑ Sent or delivered to 61A Great Suffolk Street, London SE1 0BU; and∑ Received by Muscular Dystrophy UK no later than 11am on 8th October 2019.

8 Any such power of attorney or any authority under which the proxy form is signed (or a duly certified copy of such power or authority) must be included with the proxy form.

Changing proxy instructions

9 To change your proxy instructions simply submit a new proxy appointment using the method set out above. Note that the cut-off time for receipt of proxy appointments (see above) also applies in relation to amended instructions; any amended proxy appointment received after the relevant cut-off time will be disregarded.

10 If you submit more than one valid appointment, the appointment received last before the latest time for the receipt of proxies will take precedence.

Termination of proxy appointments

11 In order to revoke a proxy instruction you will need to inform Muscular Dystrophy UK by sending a signed hard copy notice clearly stating your intention to revoke your proxy appointment to 61A Great Suffolk Street, London SE1 0BU.

12 In either case, the revocation notice must be received by Muscular Dystrophy UK no later than 11am on 8th October 2019.

13 If you attempt to revoke your proxy appointment but the revocation is received after the time specified then your proxy appointment will remain valid.

Notice is hereby given that the Annual General Meetingof the Muscular Dystrophy Group of Great Britain and Northern Ireland

will be held at The Hotel Sofitel London Heathrow, Heathrow Airport, Terminal 5, London TW6 2GD at 11:15am on Saturday 12 October 2019

AGENDAOrdinary Business1

Chairman’s welcome

2 Approval of the Minutes of the 2018 Annual General Meeting held on 13 October 2018

3To receive the Trustees’ Report and Statement of Accounts for the year ended 31 March 2019 and the Auditor’s Report thereon

4 Membership of the Board of Trustees

(a) Standing down after completing two terms of office as a Trustee:Dr Amy Jayne Knight

(b) Standing down after completing three terms of office as a Trustee:Andrew Graham

(c) Standing for re-election for a second three-year term:Charles Scott (biography enclosed)

(d) Standing for re-election for a second three-year term:Louisa Hill (biography enclosed)

(e) Standing for re-election for a second three-year term:Robbie Warner (biography enclosed)

(f) for a third, three-year term:Professor Mike Hanna to be re-elected for a third term (his second term as Chairman) (biography enclosed)

(g) Standing for re-election for a further final term of office after three terms:Baroness Celia Thomas MBE (biography enclosed)

(h) Standing for re-election for a further final term of office after three terms:(i) Ian Gordon (biography enclosed)(j) To endorse the co-option of Martin Cardoe to serve a three-year term

(biography enclosed)(k) To endorse the co-option of Joseph Gordon to serve a three-year term

(biography enclosed)

5 Re-appointment of the Auditors and to authorise the Finance Committee to agree the remuneration of haysmacintyre as Auditors by an ordinary resolution of the members.

Catherine Woodhead Wojtek Trzcinskion behalf of the Board of Trustees Company SecretaryChief Executive

6 Special Business

Recommended updates to the Memorandum and Articles of Association can be seen below; these are shared with charity members for approval at the AGM:

a) Article 3.3 (Members)The register of names only will be made available for inspection by the members of the Charity and the public.

b) Article 13.1 (Quorum)Business may be done at a general meeting only if a quorum of members is present in person or by proxy when the meeting begins to deal with its business. A quorum is twenty.

c) Article 30.1 and 30.2 (Retirement of Trustees)At the third Annual general meeting after their last election or appointment the Trustees (save for co-opted Trustees, whose retirement provisions are set out in Article 32) shall retire. All are eligible for re-election but, subject as provided in Article 30.2, no Trustee may serve for a period of more than six years without a period of at least a year out of office.

Notwithstanding the provisions of Article 30.1 above, a Trustee may stand for election for further periods without a break from office if the Board nominates that Trustee for a further period or periods by a resolution supported by a number of Trustees equal to the nearest whole number at or exceeding 70% of the total number of Trustees at that time provided no more than one third of the Trustees shall be in office pursuant to this Article.

d) Article 40.1 (A Resolution may be Approved by Signature Without a Meeting)A resolution in Writing Signed by all the Trustees or any committee or to which each Trustee has otherwise indicated agreement in writing, including by email, (or such smaller proportion as is sufficient by law from time to time) is as valid as if it had been passed at a properly held meeting of the Board or committee. The resolution may consist of several documents in the same form Signed by one or more members of the Board or committee.

e) Article 44.3 (Meetings of Committees)A committee must have minutes recorded by the charity. Copies of these minutes must be given to all Trustees.

7 Any other business

National Conference 12 October 2019

Draft Agenda

9am Registration – visit information stands and the pop up shop

Tea & coffee available

10am – 10.15am Welcome and review of the year: Professor Mike Hanna, MDUK chair

10.15am – 11.15am Muscular Dystrophy UK: 60 years of progress. Are we on the

threshold of a new era?

Research

Prof Matthew Wood, Professor of Neuroscience, Department

of Physiology, Anatomy and Genetics, University of Oxford

Dr Melissa Bowerman, Lecturer in Bioscience at Keele

University and researcher into muscle and metabolic

pathologies in neuromuscular disorders

Support and care

Sue Manning, Care Advisor

Andrew Robertson, MDUK volunteer

Future priorities

Catherine Woodhead, CEO Muscular Dystrophy UK

11.15am Muscular Dystrophy UK AGM

11.25am – 11.45am Tea & coffee break

11.45am – 12.30pm Breakout session one

Research Q&A

Finance and practical support

What’s a Care Advisor and what can they do for me?

Employing a Personal Assistant

12.30pm – 1.45pm Lunch

1.45pm – 2pm Living with a muscle-wasting condition: in conversation with Annie

Blake

2pm – 2.45pm 2019 President’s Awards with MDUK President Gabby Logan

2.45pm – 5pm Breakout sessions two and three

Getting involved in research

Mental health matters

Becoming and independent enabler; Supporting a child to

become independent

Accessing treatments; lessons from Spinraza

Employability

Research Q&A

Going on holiday

Adapting your home

Youth conference

Interactive activities

Powerchair Football tasters

Boccia tasters

Physiotherapy workshop (TBC)

The Conference ends at 5pm after the afternoon breakout sessions

Breakout sessions

Morning session Afternoon session 1 Afternoon session 2

Research Q&A Talk with researchers and the MDUK research team

Getting involved in

research

A more practical session on getting involved in clinical trials and registries etc.

Research Q&A Talk with researchers and the MDUK research team

Finance and practical support What support is available to meet the costs of living with a condition, including benefits and grants?

Mental health matters

Dr Sadie Thomas-Unsworth, Clinical Psychologist

Employability

Presenting Trailblazers Ready and Able report alongside employers and disabled people who contributed to it.

Care advisors What are care advisors and what can they do for you?

Being an independent

enabler

Supporting a child to become independent.

Going on holiday

Practical tips and insights from others about what to consider and how to plan a holiday.

Employing a personal assistant Launching the Trailblazers guide, find out more about what it means to employ a personal assistant.

Spinraza update

In partnership with SMA UK.

Adapting your home

Practical tips and insights from those who have adapted their home to suit their needs.

1

Minutes of the Annual General Meetingof the Muscular Dystrophy Group of Great Britain and Northern Ireland

held at the Hilton London Tower Bridge, 5 More London Place, Tooley Street, London SE1 2BY at 11:00am on Saturday 13 October 2018

Agenda Item 2

Trustees Present:

Mike Hanna (Chairman)Sheila HawkinsIan GordonTanvi Vyas

In Attendance:Catherine Woodhead – Interim Chief ExecutiveJenny Howard – Director of FinanceHannah Joyce – Minute taker

1 Chairman’s welcomeThe Chairman welcomed the members and confirmed the Annual General Meeting was quorate, with more than 20 members present.

The Chairman noted that 25 apologies and 19 proxy votes had been received from members prior to the meeting.

2 Approval of the Minutes of the 2017 Annual General Meeting held on 7 October 2017The minutes of the Annual General Meeting held on 7 October 2017 were approved by the members.

3 To receive the Trustees’ Report and Statement of Accounts for the year ended 31 March 2018 and the Auditor’s Report thereonThe Director of Finance, Jenny Howard presented the Trustees’ Report and Statement of Accounts for the year ended 31st March 2018 and the Auditors’ Report thereon on behalf of Honorary Treasurer, Marcus Brown.

She gave a slide presentation outlining the financial position of the charity and the research spending commitments.

In response to a member’s question it was noted that the accounts had been emailed out to members and made available via the website well in advance of the meeting. Hard copies were available at the AGM but were not posted to all members for environmental reasons, and to save paper, print and postage costs.

The members received and approved the accounts. There were no further questions.

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4 Membership of the Board of Trustees

(a) Standing down after completing two terms of office as a Trustee:David HastieThe chairman thanked David Hastie for his invaluable contribution and support during his two terms of office.

(b) Standing for re-election for a second three year term: Richard PriceThe re-election of Richard Price for a second three year term was approved by members.

(c) Standing for re-election for a third, three year term: Sheila HawkinsThe re-election of Sheila Hawkins for a third three year term was approved by members.

(d) To endorse the co-option of Tanvi Vyas to serve a three year termThe co-option of Tanvi Vyas to serve a three year term was approved by members.

5 Re-appointment of the Auditors and to authorise the Finance Committee to agree the remuneration of haysmacintyre as Auditors by an ordinary resolution of the members.Jenny Howard, Director of Finance, confirmed that haysmacintyre had been appointed as Auditors the previous year following a thorough tender process.

In response to a member’s question, the costs of the auditor were confirmed to be lower than the previous ones.

The re-appointment and remuneration of haysmacintyre as Auditors was approved by ordinary resolution of the members.

6 Any other businessThere being no further business the Chairman thanked the members for attending and closed the meeting.

MUSCULAR DYSTROPHY GROUP OF GREAT BRITAIN AND NORTHERN IRELANDANNUAL GENERAL MEETING 12 OCTOBER 2019BIOGRAPHIES OF CANDIDATES FOR THE BOARD OF TRUSTEES

Agenda Item 4

a) Charles Scott standing for re-election to the Board of TrusteesProposed by the Board of TrusteesCharles started his career in corporate finance with Wood Gundy in Toronto. He joined Morgan Stanley in US equity sales in 1985, and left the firm as Chief Operating Officer of Morgan Stanley UK in 2007. He served as a Trustee of the Morgan Stanley International Foundation from 1992-2007, and as Chairman from 1993-2000.

In addition to his role with Vantage Investment Advisory, Charles serves on a number of Polar Capital Fund Boards, and is a Managing Director of Imprimatur Capital Limited. He has been a long-standing supporter of the work of Muscular Dystrophy UK, as well as an active supporter of the Q Trust and the charity’s annual Sports Quiz. Charles sits on the charity’s Finance Committee and Appeal Board, he is actively involved in raising funds for the MDUK Oxford Neuromuscular Centre.

b) Louisa Hill standing for re-election to the Board of TrusteesProposed by the Board of TrusteesLouisa’s younger son Archie was diagnosed with Duchenne muscular dystrophy in 2009. At the time, the family was told there was nothing they could do. Louisa feels that joining the Board will be one way of changing that; she believes that as a parent, she can make a difference. She is passionate about helping other families with Duchenne muscular dystrophy, and indeed other muscle-wasting conditions. Her main aim is to help families that have just been given their child’s diagnosis.

A NNEB Qualified Nursery Nurse with three years’ Montessori Teaching, Louisa has been heavily involved with the successful campaign for access to Translarna. This has included meetings with MPs, NICE, NHS England and PTC Therapeutics. Louisa has been a driving force behind the All Party Parliamentary Group for Muscular Dystrophy report: Access to psychological support for people with neuromuscular conditions. Louisa is a strong supporter of the charity, experienced in dealing with the media, and a very successful fundraiser, supported by her enthusiastic participation of the Sports Quiz Committee.

c) Robert (Robbie) Warner standing for re-election to the Board of TrusteesProposed by the Board of TrusteesRobbie has been re-elected for a further term as a Trustee. Robbie has recently retired and left his former role as an experienced senior Head of Social Work for a local authority in Scotland. He has a son, Eoghan, who has Duchenne muscular dystrophy, and who is currently at university studying History and Politics.

Robbie also serves as a member of the JPT Panel and has been the Chair of the Scottish Council. With his wife, Elaine, and family, he has undertaken several fundraising challenges to support the work of the charity. Robbie is passionate

about the rights of those with muscle-wasting conditions and has had considerable experience in alerting Ministers and MSPs in the Scottish Parliament to shortfalls in services. He is also experienced in presenting issues in the media and is adept at building relationships and working closely with healthcare professionals and our supporters.

d) Professor Michael Hanna (Chair) standing for re-election to the Board of TrusteesProposed by the Board of TrusteesProfessor Mike Hanna joined the board of Trustees in 2013, and is passionate about applying research to find better treatments for patients and families with neuromuscular conditions. He is an active member of the charity’s Appointments and Remuneration Committee and a keen fundraiser; most recently participating in the Newton Oxford Town & Gown 10k.

Professor Hanna is a Consultant Neurologist specialising in neuromuscular conditions at the National Hospital Queen Square, Director of the MRC Centre for translational research in neuromuscular conditions and Director of the UCL Institute of Neurology. He leads an active research programme and has published more than 200 peer-reviewed original research papers.

e) Baroness Celia Thomas MBE standing for re-election to the Board of TrusteesProposed by the Board of TrusteesCelia was made a Life Peer in 2006 and she has been a driving force behind the work of the All Party Parliamentary Group for Muscular Dystrophy, of which she is now a very active Vice Chair. She has also addressed issues such as welfare reform and disability rights in Parliament.

Celia chairs the charity’s Services Development Committee, where she brings together representatives from NHS England, NHS Commissioners, consultants and health and social care professionals, as well as people living with muscle-wasting conditions. She has Pompe disease.

f) Ian Gordon standing for re-election to the Board of TrusteesProposed by the Board of TrusteesIan has four children and his youngest son, Ben, has limb girdle muscular dystrophy. Ben went to university and now has a full-time job working in media for a major UK plc.

Ian’s early career was in human resources and he now runs his own management consultancy business alongside working for Cranfield University. Ian brings his insights from this experience to the charity, and he has the longest continuous service of the Trustees, having joined the Board in 2004. Ian is an active member of the charity’s Appointments and Remuneration Committee, Research Investment Fund Committee and the Finance Committee, which he has previously chaired.

g) Martin Cardoe for co-option to the Board of TrusteesProposed by the Board of TrusteesMartin is a career marketing and communications professional. A specialist in the development and direction of strategic programmes embracing brand and reputation management, financial and corporate communications, business

development and public relations. He has worked for major international corporations including Barclays Wealth, 3i Group, Orange, Arthur Andersen, Goldman Sachs and S.G.Warburg & Co.

He sits currently on both the MDUK Appeal Board and Sports Quiz committee and intends to support and champion the Charity further by enthusiastically and actively providing appropriate encouragement, advice, and guidance drawing on his communications and marketing knowledge, experience and expertise.

h) Joseph (Joe) Gordon standing for co-option to the Board of TrusteesProposed by the Board of TrusteesJoe took over as Head of the online and telephone bank first direct in 2017, with the aim of exceeding its ambitious growth targets, and enhancing its reputation for innovation and customer service. At 35 Joe’s one of the youngest bank leaders in the UK and a great fit for the Leeds-based bank, which is one of the most dynamic success stories in banking in the last 30 years.

Prior to first direct, Joe headed up HSBC UK’s contact centre operation, looking after 11 sites and c. 4,500 people. He moved to HSBC from BT in 2015, where he held a variety of roles including ‘Head of Service’ for billing and enquiries, Business improvement consultant, Marketing operations manager and Commercial finance manager.

Joe began his career at Sainsbury’s on the retail graduate scheme in store, before moving to supply chain operations and then finally as a ‘Planning and Support Manager’ to the CEO of Sainsbury’s Convenience. Throughout his career, Joe has sought out roles that are customer centric and enjoys leading large teams through change and helping people develop themselves and achieve their potential. A keen foodie and gym enthusiast – possibly linked – outside of work Joe is kept very busy with his young family.

Joe has a personal connection to Muscular Dystrophy, he has previously raised funds for the charity and recently joined the Finance Committee.

MUSCULAR DYSTROPHY GROUP OF GREAT BRITAIN AND NORTHERN IRELANDANNUAL GENERAL MEETING 12 OCTOBER 2019UPDATES TO THE MEMORANDUM AND ARTICLES OF ASSOCIATION

Agenda Item 6

Recommended updates to the Memorandum and Articles of Association can be seen separately on the agenda; these are shared with charity members for approval at the AGM. Please see below for some clarifying comments on these changes.

a) Article 3.3 (Members)

To comply with recent Data Protection legislation we are restricting the information we make available to the public about Members to their names only – and not details such as their email addresses and addresses etc.

b) Article 13.1 (Quorum)

We are making it expressly clear that in determining whether there is a Quorum for meetings – we also count those persons present by reason of having given a proxy.

c) Article 30.1 and 30.2 (Retirement of Trustees)

Trustees currently have to stand down after two terms of 3 years unless a further term is approved by at least seventy percent of Trustees. To ensure good corporate governance and a range of experiences continually refreshing the Board – we are proposing that no more than one third of Trustees from time to time can be extended for a further term in this manner.

d) Article 40.1 (A Resolution may be Approved by Signature Without a Meeting)

We are making it clear that emails may be taken account of when determining whether a resolution is validly passed.

e) Article 44.3 (Meetings of Committees)

We will make copies of all minutes available to Trustees directly rather than keeping them in Minute Books.