David Cameron, Britain's former prime minister and foreign secretary, will help spearhead an Oxford research centre dedicated to developing new treatments for rare genetic diseases, inspired by the death of his son 15 years ago.
Ivan, who died aged six, suffered from Ohtahara syndrome, a rare form of epilepsy characterised by seizures.
Lord Cameron said he intends to use his role as chairman of an advisory council at the Oxford-Harrington Rare Disease Centre to help bring together "distinguished experts" to "develop 40 new treatments for rare diseases in the next decade".
"As a father I know all too well the impact of rare diseases," he said. "We miss our Ivan every day – all these years on, our loss is still so raw. But the steps we are taking now means that, in the not-too-distant future, families like ours will have hope. It is vital that we try to give it to them."
Speaking to BBC Radio 4 on Tuesday, Lord Cameron spoke about the shock the couple had experienced, realising your child is “never going to be able to walk or talk, or take part in so much of life”.
"But I think the other thing is what doctors call the diagnostic odyssey, which is when Ivan was born over 20 years ago, you had test after test – blood test, spinal fluid tests, brain scans, observing everything that happened – and still, all you ended up with was a description of some very bad symptoms but no real understanding of any underlying causes,” he said.
“And so what drives me on this is to think, it would be so great, that even if what you get is a proper description of what is wrong, that is so much better than so much time spent in these painful situations trying to find out more.”
Because 80 per cent of rare diseases are genetic, sequencing of genomes to try to get to the bottom of these diseases, which the new centre will do, means that it might also offer the hope of new treatment or potentially even cures, he added.
Lord Cameron said huge advances have been made in the diagnosis of rare diseases since his son’s death. Listening to leading geneticists at a recent seminar at the University of Oxford, he said he had “the real sense” if Ivan was born today and “all the right things happened”, including observing his genome and medical data, his life could have been different.
“I think that is really exciting," he said on Tuesday. "I sat here thinking, 'oh my God, if this happened today, he could have had a completely different and much longer life.'”
The centre is a partnership between the University of Oxford and the Harrington Discovery Institute in Cleveland, Ohio.
As prime minister, Lord Cameron launched the 100,000 Genomes Project in 2012, under which the genomes of 100,000 NHS patients with a rare disease or cancer were sequenced.
He called establishing Genomics England, the company set up to deliver the project, one of his "proudest moments as PM" and said of all the causes he has advocated: "This one really is personal."
The UK is already home to Zayed Centre for Research – which opened five years ago – to treat the world’s rarest diseases in children, from babies born without functioning immune systems to liver and metabolic disorders. It was built partly with a £60 million ($78.5 million) donation from the UAE'S Sheikha Fatima bint Mubarak, Mother of the Nation, and is a partnership between Great Ormond Street Hospital and its children's charity, and University College London.
It was awarded a licence to manufacture drugs by the Medicines and Healthcare Products Regulatory Authority (MHRA) in February. In vivo treatments are currently being used for liver, brain and neuromuscular disorders as well as some metabolic conditions.
Transgender report
THE BIO: Mohammed Ashiq Ali
Proudest achievement: “I came to a new country and started this shop”
Favourite TV programme: the news
Favourite place in Dubai: Al Fahidi. “They started the metro in 2009 and I didn’t take it yet.”
Family: six sons in Dubai and a daughter in Faisalabad
More from Neighbourhood Watch:
Killing of Qassem Suleimani
National Editorial: Suleimani has been killed, now we must de-escalate
Mina Al Oraibi: Air strike casts a long shadow over the decade ahead
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Damien McElroy: A CEO tasked with spreading Iran's influence
Hussein Ibish: Trump's order on solid constitutional ground
Rashmee Roshan Lall: Sound of silence in South Asia
Tomorrow 2021
On Women's Day
Dr Nawal Al-Hosany: Why more women should be on the frontlines of climate action
Shelina Janmohamed: Why shouldn't a spouse be compensated fairly for housework?
Samar Elmnhrawy: How companies in the Middle East can catch up on gender equality
The National Editorial: Is there much to celebrate on International Women's Day 2021?
Some of Darwish's last words
"They see their tomorrows slipping out of their reach. And though it seems to them that everything outside this reality is heaven, yet they do not want to go to that heaven. They stay, because they are afflicted with hope." - Mahmoud Darwish, to attendees of the Palestine Festival of Literature, 2008
His life in brief: Born in a village near Galilee, he lived in exile for most of his life and started writing poetry after high school. He was arrested several times by Israel for what were deemed to be inciteful poems. Most of his work focused on the love and yearning for his homeland, and he was regarded the Palestinian poet of resistance. Over the course of his life, he published more than 30 poetry collections and books of prose, with his work translated into more than 20 languages. Many of his poems were set to music by Arab composers, most significantly Marcel Khalife. Darwish died on August 9, 2008 after undergoing heart surgery in the United States. He was later buried in Ramallah where a shrine was erected in his honour.
Zayed Sustainability Prize
While you're here
Gavin Esler: Coronavirus offers stinging rebuke to protectionists
Kareem Shaheen: Pandemics can save us from waging wars
Sholto Byrnes: Why the climate change clash will get nastier
About Okadoc
Date started: Okadoc, 2018
Founder/CEO: Fodhil Benturquia
Based: Dubai, UAE
Sector: Healthcare
Size: (employees/revenue) 40 staff; undisclosed revenues recording “double-digit” monthly growth
Funding stage: Series B fundraising round to conclude in February
Investors: Undisclosed
COMPANY%20PROFILE
The national orchestra
KILLING OF QASSEM SULEIMANI
National Editorial: Suleimani has been killed, now we must de-escalate
Mina Al Oraibi: Air strike casts a long shadow over the decade ahead
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Damien McElroy: A CEO tasked with spreading Iran's influence
Hussein Ibish: Trump's order on solid constitutional ground
Simon Waldman: Cautious Israel keeping a low profile
Rashmee Roshan Lall: Sound of silence in South Asia
Fanar Haddad: The Iranian response will be gradual
Kareem Shaheen on Canada
Our commentary on Brexit
- Alistair Burt: Despite Brexit, Britain can remain a world power
- Sam Williams: Departure is influenced by its sense of place
The%20Afghan%20connection
While you're here
National Editorial: World trade has started to look inwards
Callum Patton: ‘Arrival of Asian century’ has eclipsed US
Robin Mills: Importance of China's energy markets clearer
The%20Witcher%20-%20season%20three
Jetour T1 specs
Engine: 2-litre turbocharged
Power: 254hp
Torque: 390Nm
Price: From Dh126,000
Available: Now
Defence review at a glance
• Increase defence spending to 2.5% of GDP by 2027 but given “turbulent times it may be necessary to go faster”
• Prioritise a shift towards working with AI and autonomous systems
• Invest in the resilience of military space systems.
• Number of active reserves should be increased by 20%
• More F-35 fighter jets required in the next decade
• New “hybrid Navy” with AUKUS submarines and autonomous vessels
Saudi National Day
Read more about the coronavirus
While you're here
More from this package
Tomorrow 2021
On Women's Day
Dr Nawal Al-Hosany: Why more women should be on the frontlines of climate action
Shelina Janmohamed: Why shouldn't a spouse be compensated fairly for housework?
Samar Elmnhrawy: How companies in the Middle East can catch up on gender equality
Justin Thomas: Challenge the notion that 'men are from Mars, women are from Venus'
The specs
AT4 Ultimate, as tested
Engine: 6.2-litre V8
Power: 420hp
Torque: 623Nm
Transmission: 10-speed automatic
Price: From Dh330,800 (Elevation: Dh236,400; AT4: Dh286,800; Denali: Dh345,800)
On sale: Now
Watch this space
The biog
Simon Nadim has completed 7,000 dives.
The hardest dive in the UAE is the German U-boat 110m down off the Fujairah coast.
As a child, he loved the documentaries of Jacques Cousteau
He also led a team that discovered the long-lost portion of the Ines oil tanker.
If you are interested in diving, he runs the XR Hub Dive Centre in Fujairah
MORE ON AFGHANISTAN
MADAME%20WEB
Tomorrow 2021
Killing of Qassem Suleimani
National Editorial: Suleimani has been killed, now we must de-escalate
Mina Al Oraibi: Air strike casts a long shadow over the decade ahead
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Damien McElroy: A CEO tasked with spreading Iran's influence
Simon Waldman: Cautious Israel keeping a low profile
Concrete and Gold
Foo Fighters
RCA records
Youth YouTuber Programme
The programme will be presented over two weeks and will cover the following topics:
- Learning, scripting, storytelling and basic shots
- Master on-camera presence and advanced script writing
- Beating the algorithm and reaching your core audience
Mohammed bin Zayed Majlis
Killing of Qassem Suleimani
National Editorial: Suleimani has been killed, now we must de-escalate
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Damien McElroy: A CEO tasked with spreading Iran's influence
Hussein Ibish: Trump's order on solid constitutional ground
Simon Waldman: Cautious Israel keeping a low profile
More coverage from the Future Forum
• Remittance charges will be tackled by blockchain
• UAE's monumental and risky Mars Mission to inspire future generations, says minister
• Could the UAE drive India's economy?
• News has a bright future and the UAE is at the heart of it
• Architecture is over - here's cybertecture
• The National announces Future of News journalism competition
• Round up: Experts share their visions of the world to come
More from Neighbourhood Watch:
Towering concerns
Investing in the future
The%20US%20Congress%20explained
QUALIFYING RESULTS
1. Max Verstappen, Netherlands, Red Bull Racing Honda, 1 minute, 35.246 seconds.
2. Valtteri Bottas, Finland, Mercedes, 1:35.271.
3. Lewis Hamilton, Great Britain, Mercedes, 1:35.332.
4. Lando Norris, Great Britain, McLaren Renault, 1:35.497.
5. Alexander Albon, Thailand, Red Bull Racing Honda, 1:35.571.
6. Carlos Sainz Jr, Spain, McLaren Renault, 1:35.815.
7. Daniil Kvyat, Russia, Scuderia Toro Rosso Honda, 1:35.963.
8. Lance Stroll, Canada, Racing Point BWT Mercedes, 1:36.046.
9. Charles Leclerc, Monaco, Ferrari, 1:36.065.
10. Pierre Gasly, France, Scuderia Toro Rosso Honda, 1:36.242.
Eliminated after second session
11. Esteban Ocon, France, Renault, 1:36.359.
12. Daniel Ricciardo, Australia, Renault, 1:36.406.
13. Sebastian Vettel, Germany, Ferrari, 1:36.631.
14. Antonio Giovinazzi, Italy, Alfa Romeo Racing Ferrari, 1:38.248.
Eliminated after first session
15. Antonio Giovinazzi, Italy, Alfa Romeo Racing Ferrari, 1:37.075.
16. Kimi Raikkonen, Finland, Alfa Romeo Racing Ferrari, 1:37.555.
17. Kevin Magnussen, Denmark, Haas Ferrari, 1:37.863.
18. George Russell, Great Britain, Williams Mercedes, 1:38.045.
19. Pietro Fittipaldi, Brazil, Haas Ferrari, 1:38.173.
20. Nicholas Latifi, Canada, Williams Mercedes, 1:38.443.
Zayed Sustainability Prize
More from Neighbourhood Watch:
Plastic tipping points
While you're here
Layla Mashkoor: How policing has changed since the US protests began
Gavin Esler: The uniquely threads that tie Rodney King to George Floyd
Colin Randall: Police suicides on the rise in France after months of protests
E-cigarettes report
More from this story
While you're here
Con Coughlin: Nato must renew its sense of common purpose
Sholto Byrnes: In today's times, what is Nato really good for?
C Uday Bhaskar: Could the 'Quad' become Asia's new Nato?
Scoreline
Arsenal 0 Manchester City 3
- Agüero 18'
- Kompany 58'
- Silva 65'
While you're here
The National editorial: Turkey's soft power weighs heavy on Europe's Muslims
Con Coughlin: How extremists use Zoom and other tools to exploit pandemic
Nicky Harley: Peace TV preacher Zakir Naik prompts UK hate laws review
More from Neighbourhood Watch
KILLING OF QASSEM SULEIMANI
National Editorial: Suleimani has been killed, now we must de-escalate
Mina Al Oraibi: Air strike casts a long shadow over the decade ahead
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Damien McElroy: A CEO tasked with spreading Iran's influence
Hussein Ibish: Trump's order on solid constitutional ground
Simon Waldman: Cautious Israel keeping a low profile
Rashmee Roshan Lall: Sound of silence in South Asia
Richard Olson: Why Afghanistan will be very wary
More coverage from the Future Forum
• Remittance charges will be tackled by blockchain
• UAE's monumental and risky Mars Mission to inspire future generations, says minister
• Could the UAE drive India's economy?
• News has a bright future and the UAE is at the heart of it
• Architecture is over - here's cybertecture
• The National announces Future of News journalism competition
• Round up: Experts share their visions of the world to come
Palestine and Israel
Michael Young: Israel's 'iron wall' is sealing the country off from peace
Saeb Erekat: Palestine is capable of overcoming the coronavirus spread
Alexandra Chaves: Gazan artists paint to bring attention to the coronavirus
More from Neighbourhood Watch:
The%20specs
War on waste
BULKWHIZ PROFILE
Date started: February 2017
Founders: Amira Rashad (CEO), Yusuf Saber (CTO), Mahmoud Sayedahmed (adviser), Reda Bouraoui (adviser)
Based: Dubai, UAE
Sector: E-commerce
Size: 50 employees
Funding: approximately $6m
Investors: Beco Capital, Enabling Future and Wain in the UAE; China's MSA Capital; 500 Startups; Faith Capital and Savour Ventures in Kuwait
MOUNTAINHEAD REVIEW
Starring: Ramy Youssef, Steve Carell, Jason Schwartzman
Director: Jesse Armstrong
Rating: 3.5/5
Transgender report
More on Quran memorisation:
Top%2010%20most%20competitive%20economies
War on waste
Palestine and Israel - live updates
KILLING OF QASSEM SULEIMANI
National Editorial: Suleimani has been killed, now we must de-escalate
Mina Al Oraibi: Air strike casts a long shadow over the decade ahead
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Damien McElroy: A CEO tasked with spreading Iran's influence
Hussein Ibish: Trump's order on solid constitutional ground
Simon Waldman: Cautious Israel keeping a low profile
Opinions on Lebanon
Kareem Shaheen: Lebanon is being forced to relive its traumas
Michael Young: Hezbollah is losing its ability to intimidate anyone
Raghida Dergham: Lebanon-Israel talks will mark another win for Donald Trump
THE BIO
Born: Mukalla, Yemen, 1979
Education: UAE University, Al Ain
Family: Married with two daughters: Asayel, 7, and Sara, 6
Favourite piece of music: Horse Dance by Naseer Shamma
Favourite book: Science and geology
Favourite place to travel to: Washington DC
Best advice you’ve ever been given: If you have a dream, you have to believe it, then you will see it.
While you're here
Chitrabhanu Kadalayil: Singapore election is more than just a family feud over LKY's legacy
Sholto Byrnes: Robert Mugabe and Lee Kuan Yew: two leaders with very different legacies
Dr Vivian Balakrishnan: UAE and Singapore can be partners for a world in transition
Nick March: Singapore and UAE are on the move – in airport development
Company%20Profile
While you're here
Sholto Byrnes: BLM has turned so many people off – and that matters
Hussein Ibish: Will Democrats follow Republicans to the political fringe?
Olivia Cuthbert: 'Reign of terror' and the rule of racism in America
James Zogby: Race hate and gun crime are killing the US
Our commentary on Brexit
- Alistair Burt: Despite Brexit, Britain can remain a world power
- Con Coughlin: Choice of the British people will be vindicated
Tomorrow 2021
The burning issue
The internal combustion engine is facing a watershed moment – major manufacturer Volvo is to stop producing petroleum-powered vehicles by 2021 and countries in Europe, including the UK, have vowed to ban their sale before 2040. The National takes a look at the story of one of the most successful technologies of the last 100 years and how it has impacted life in the UAE.
Read part four: an affection for classic cars lives on
Read part three: the age of the electric vehicle begins
Read part two: how climate change drove the race for an alternative
Killing of Qassem Suleimani
National Editorial: Suleimani has been killed, now we must de-escalate
Mina Al Oraibi: Air strike casts a long shadow over the decade ahead
Jack Moore: Why the assassination is such a monumental gamble
Matthew Levitt: Iran retains its ability to launch terror attacks
Hussein Ibish: Trump's order on solid constitutional ground
Simon Waldman: Cautious Israel keeping a low profile
Why does a queen bee feast only on royal jelly?
Some facts about bees:
The queen bee eats only royal jelly, an extraordinary food created by worker bees so she lives much longer
The life cycle of a worker bee is from 40-60 days
A queen bee lives for 3-5 years
This allows her to lay millions of eggs and allows the continuity of the bee colony
About 20,000 honey bees and one queen populate each hive
Honey is packed with vital vitamins, minerals, enzymes, water and anti-oxidants.
Apart from honey, five other products are royal jelly, the special food bees feed their queen
Pollen is their protein source, a super food that is nutritious, rich in amino acids
Beewax is used to construct the combs. Due to its anti-fungal, anti-bacterial elements, it is used in skin treatments
Propolis, a resin-like material produced by bees is used to make hives. It has natural antibiotic qualities so works to sterilize hive, protects from disease, keeps their home free from germs. Also used to treat sores, infection, warts
Bee venom is used by bees to protect themselves. Has anti-inflammatory properties, sometimes used to relieve conditions such as rheumatoid arthritis, nerve and muscle pain
Honey, royal jelly, pollen have health enhancing qualities
The other three products are used for therapeutic purposes
Is beekeeping dangerous?
As long as you deal with bees gently, you will be safe, says Mohammed Al Najeh, who has worked with bees since he was a boy.
“The biggest mistake people make is they panic when they see a bee. They are small but smart creatures. If you move your hand quickly to hit the bees, this is an aggressive action and bees will defend themselves. They can sense the adrenalin in our body. But if we are calm, they are move away.”
