50 years together - His Royal Highness The Duke of Edinburgh, Royal Patron to Muscular Dystrophy UK

© Jonathan Yeo 2016

50 years together

His Royal Highness The Duke of Edinburgh, K.G., K.T. Patron of Muscular Dystrophy UK since 1966

Credit: Royal Collection Trust/© Her Majesty Queen Elizabeth II 2016; Photographer: Peter Smith

Credit: Royal Collection Trust/© Her Majesty Queen Elizabeth II 2016; Photographer: Peter Smith

Picture Gallery

Credit: Royal Collection Trust/© Her Majesty Queen Elizabeth II 2016; Photographer: Peter Smith

The history of St. James’s Palace

Grand Staircase

Tapestry Room

Credit: Royal Collection Trust/© Her Majesty Queen Elizabeth II 2016; Photographer: Peter Smith

Credit: Royal Collection Trust/© Her Majesty Queen Elizabeth II 2016; Photographer: Peter Smith

The Royal Household

Throne Room

St. James’s Palace is one of the oldest and most significant royal residences, having housed 17 generations of the Royal Family. Built in 1532 by King Henry VIII, the Palace was originally intended to be a temporary residence for his second wife Anne Boleyn until the dissolution of his marriage to Catherine of Aragon.

St. James’s Palace has witnessed several key historical events. It was here that Queen Elizabeth I addressed her troops when the Spanish Armada was sailing against England in 1588. Just over 60 years later, Charles I spent his final moments here before he was executed in January 1649.

The palace was the official headquarters of the Monarchy throughout the 18th Century.

When George III purchased the nearby Buckingham House – later turned into a palace by George IV – he used St. James’s Palace for official functions only.

Enfilade of State Rooms

Tapestry Room

Credit: Royal Collection Trust/© Her Majesty Queen Elizabeth II 2016; Photographer: Peter Smith

Queen Victoria and Prince Albert were married in the Chapel Royal in 1840 and used the Palace for many ceremonial occasions, including the marriage of their daughter Princess Victoria to Prince Frederick of Prussia.

Today, St. James’s Palace remains central to the life and work of many of the members of the Royal Family and Royal Household. Every foreign envoy will officially be accredited to the Court of St. James’s before being received by the Sovereign at Buckingham Palace.

In November 2010, Prince William and Miss Catherine Middleton announced their engagement in the Entrée Room at St. James’s Palace. The adjacent Clarence House is the official residence of the Prince of Wales and the Duchess of Cornwall. Both the Princess Royal and Princess Alexandra, the Hon. Lady Ogilvy, currently reside at the Palace.

The Armoury

Credit: Royal Collection Trust/© Her Majesty Queen Elizabeth II 2016; Photographer: Peter Smith

In the 1860s, William Morris was appointed to redecorate three of the state rooms. This was a bold move, on the part of Queen Victoria, in recognising the burgeoning Arts and Crafts movement. Still, parts of the Palace’s original structure remain today, including the Clock Tower and the Chapel Royal, which serve as outstanding examples of 16th Century Tudor architecture.

Credit: Royal Collection Trust/© Her Majesty Queen Elizabeth II 2016; Photographer: Peter Smith

Credit: Royal Collection Trust/© Her Majesty Queen Elizabeth II 2016; Photographer: Peter Smith

St. James’s Palace has undergone several renovations over the centuries. When the Palace of Whitehall burned down in 1698, rather than rebuild it, Queen Anne commissioned Sir Christopher Wren to enlarge the State Apartments and build a ballroom. When a ravaging fire destroyed large parts of the Palace in 1809, George IV commissioned John Nash, Buckingham Palace’s architect, to redesign the State Apartments with richly adorned neoBaroque rooms.

Entrée Room

The beginnings In the summer of 1966, HRH The Prince Philip, Duke of Edinburgh kindly agreed to become Royal Patron of Muscular Dystrophy UK (then Muscular Dystrophy Group of Great Britain and Northern Ireland). In its own way, this was considered a tribute to the rapid growth and high achievements of the charity since it was established six years before.

The then Chairman of the charity, Professor Nattrass, noted at the time that His Royal Highness’ agreement to become the Patron gave “immense satisfaction and encouragement to all”.

In this same year, the new Muscular Dystrophy Research Laboratories were opened at the Newcastle General Hospital. It was in Newcastle where one of the charity’s founders, Lord Walton of Detchant, conducted his research into neuromuscular conditions, over many years. Today, Newcastle Centre is among the best in the world, delivering pioneering research and clinical trials for people, from right across the country, who have muscular dystrophy.

Since its foundation, Muscular Dystrophy UK has always played a vital role through funding groundbreaking research and providing support for people living with muscle-wasting conditions. Today, we are as committed as we have ever been to beating these conditions. But we couldn’t do this without the help of our Royal Patron and all our supporters.

We give our heartfelt thanks to everyone who has played a part in this progress.

1960s The Muscular Dystrophy Group of Great Britain and Northern Ireland was established in 1959.

In the ‘60s, life-expectancy for people living with Duchenne muscular dystrophy was around 14 years. The first bone marrow transplant was conducted in leukaemia.

Breakthroughs Emery-Dreifuss muscular dystrophy distinguished as separate from Duchenne and Becker muscular dystrophies Discovery of Satellite cell using electron microscope Serum Creating Kinase (SCK) test developed for diagnosing muscular dystrophy First human egg fertilised in a test tube, beginning of in vitro fertilisation (IVF) technologies First Paralympic Games held in Rome in 1960

1970s In the ‘70s, campaigning for disability rights gained real momentum. There were also several landmark moments in stem cell research, and new techniques for sequencing DNA were devised.

Breakthroughs First-ever clinical trial on the use of steroids in Duchenne muscular dystrophy Bethlem myopathy first described The first IVF baby born in England The Chronically Sick and Disabled Persons Act 1970: first legislation in the world to recognise and give rights to people with disabilities Alf Morris MP appointed as Britain’s first Minister for Disabled People

1980s In the ‘80s, researchers identified the particular gene on the X chromosome that, when mutated, leads to Duchenne muscular dystrophy. Shortly after, the protein associated with the gene was identified and named dystrophin.

By now, 12 percent of boys living with Duchenne muscular dystrophy live up to the age of 25.

Breakthroughs Discovery of the dystrophin gene Discovery of utrophin MDX mouse first described Pre-implantation genetic diagnosis (PGD) developed, to test IVF embryos for inherited diseases The Education Act 1981 paved the way for the integration of children with ‘special needs’

Press coverage from announcement of new Patron July 1966

1990s The ‘90s saw the establishment of the European Medicines Authority (EMA). The Human Fertilisation and Embryology Act was passed, primarily to regulate the practice of IVF. Fifty-three percent of boys living with Duchenne muscular dystrophy live up to the age of 25.

Breakthroughs The gene that causes Duchenne muscular dystrophy cloned, giving better understanding of the condition Human gene therapy trials began, to fight Duchenne muscular dystrophy Discovery that stem cells can differentiate into different types of cells Disability Discrimination Act 1995 introduced First stations giving access to wheelchair users on the London Underground created

2000s In the ‘00s, the NorthStar project was set up to improve standards of care. It has become the largest natural history database for Duchenne muscular dystrophy. The MDX consortium was established, which led to one of the first exon skipping trials in Duchenne muscular dystrophy.

Breakthroughs Human genome sequenced and assembled HFEA granted first UK licence for therapeutic the therapeutic use of embryos to the Centre for Life, Newcastle First-ever clinical trial for a long-term effective treatment for Duchenne muscular dystrophy, using exon skipping Discovery that satellite cells can self-renew and therefore are stem cells Disability Rights Commission launched in 2000

2010s The fight to beat muscular-dystrophy continues.

Some men living with Duchenne reach their 40s with the first-ever Duchenne standards of care introduced.

Breakthroughs Translarna, the first-ever muscular dystrophy drug addressing an underlying genetic cause of Duchenne muscular dystrophy, is granted a licence in the EU Regulations passed by Parliament for mitochondrial donation IVF The UK Government ratified the United Nations Convention on the Rights of Persons with Disabilities Ten Centres of Excellence supporting patients with muscular dystrophy recognised in the UK Equality Act 2010 is introduced

Conclusion In 1966, the Muscular Dystrophy Group of Great Britain and Northern Ireland’s net income was recorded as £154,000 with a commitment of £93,419 made towards research. We have come a long way since then. Today, 50 years on, Muscular Dystrophy UK’s net income is £6.1million, with a commitment of £3.6million into research.

We are seeing some real advances in the search for treatments and cures, with several drugs currently in clinical trials.

This year, for the first time ever, a drug addressing an underlying cause of muscular dystrophy is now being made available on the NHS. In addition, Parliament approved regulations to allow clinical trials to begin, which could see couples able to have children without the risk of passing on their condition, following the development of mitochondrial donation IVF. Together, we have played a long-term role in all of these advances. However, we are very clear we cannot be complacent. We need to continue accelerating the search for treatments and cures.

Every day counts.

Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. We’re providing a range of services and opportunities to help people live as independently as possible.

We’re working with world-class researchers and won’t stop until we find treatments and cures for all our conditions.

We’re a first port of call for 4,000 families in the UK newly-diagnosed with muscle-wasting conditions every year. We offer a personal support system at their point of need, with a specialist helpline and free information.

For over 50 years, we’ve been here for families.

Muscular Dystrophy UK 61A Great Suffolk Street London SE1 0BU 0800 652 6352 (freephone) info@musculardystrophyuk.org www.musculardystrophyuk.org

With many thanks to the Patrick family Registered Charity No. 205395 and Registered Scottish Charity No. SC039445