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.
The specs
Engine: 2.0-litre 4-cylinder turbo
Power: 240hp at 5,500rpm
Torque: 390Nm at 3,000rpm
Transmission: eight-speed auto
Price: from Dh122,745
On sale: now
How Filipinos in the UAE invest
A recent survey of 10,000 Filipino expatriates in the UAE found that 82 per cent have plans to invest, primarily in property. This is significantly higher than the 2014 poll showing only two out of 10 Filipinos planned to invest.
Fifty-five percent said they plan to invest in property, according to the poll conducted by the New Perspective Media Group, organiser of the Philippine Property and Investment Exhibition. Acquiring a franchised business or starting up a small business was preferred by 25 per cent and 15 per cent said they will invest in mutual funds. The rest said they are keen to invest in insurance (3 per cent) and gold (2 per cent).
Of the 5,500 respondents who preferred property as their primary investment, 54 per cent said they plan to make the purchase within the next year. Manila was the top location, preferred by 53 per cent.
Need to know
When: October 17 until November 10
Cost: Entry is free but some events require prior registration
Where: Various locations including National Theatre (Abu Dhabi), Abu Dhabi Cultural Center, Zayed University Promenade, Beach Rotana (Abu Dhabi), Vox Cinemas at Yas Mall, Sharjah Youth Center
What: The Korea Festival will feature art exhibitions, a B-boy dance show, a mini K-pop concert, traditional dance and music performances, food tastings, a beauty seminar, and more.
For more information: www.koreafestivaluae.com
FIXTURES
December 28
Stan Wawrinka v Pablo Carreno Busta, 5pm
Milos Raonic v Dominic Thiem, no earlier then 7pm
December 29 - semi-finals
Rafael Nadal v Stan Wawrinka / Pablo Carreno Busta, 5pm
Novak Djokovic v Milos Raonic / Dominic Thiem, no earlier then 7pm
December 30
3rd/4th place play-off, 5pm
Final, 7pm
F1 The Movie
Starring: Brad Pitt, Damson Idris, Kerry Condon, Javier Bardem
Director: Joseph Kosinski
Rating: 4/5
2019 Asian Cup final
Japan v Qatar
Friday, 6pm
Zayed Sports City Stadium, Abu Dhabi
Super 30
Produced: Sajid Nadiadwala and Phantom Productions
Directed: Vikas Bahl
Cast: Hrithik Roshan, Pankaj Tripathi, Aditya Srivastav, Mrinal Thakur
Rating: 3.5 /5
Labour dispute
The insured employee may still file an ILOE claim even if a labour dispute is ongoing post termination, but the insurer may suspend or reject payment, until the courts resolve the dispute, especially if the reason for termination is contested. The outcome of the labour court proceedings can directly affect eligibility.
- Abdullah Ishnaneh, Partner, BSA Law
Representing%20UAE%20overseas
%3Cp%3E%0DIf%20Catherine%20Richards%20debuts%20for%20Wales%20in%20the%20Six%20Nations%2C%20she%20will%20be%20the%20latest%20to%20have%20made%20it%20from%20the%20UAE%20to%20the%20top%20tier%20of%20the%20international%20game%20in%20the%20oval%20ball%20codes.%0D%3Cbr%3E%20%0D%3Cbr%3E%3Cstrong%3ESeren%20Gough-Walters%20(Wales%20rugby%20league)%3C%2Fstrong%3E%0D%3Cbr%3EBorn%20in%20Dubai%2C%20raised%20in%20Sharjah%2C%20and%20once%20an%20immigration%20officer%20at%20the%20British%20Embassy%20in%20Abu%20Dhabi%2C%20she%20debuted%20for%20Wales%20in%20rugby%20league%20in%202021.%0D%3Cbr%3E%20%0D%3Cbr%3E%3Cstrong%3ESophie%20Shams%20(England%20sevens)%3C%2Fstrong%3E%0D%3Cbr%3EWith%20an%20Emirati%20father%20and%20English%20mother%2C%20Shams%20excelled%20at%20rugby%20at%20school%20in%20Dubai%2C%20and%20went%20on%20to%20represent%20England%20on%20the%20sevens%20circuit.%20%0D%3Cbr%3E%20%0D%3Cbr%3E%3Cstrong%3EFiona%20Reidy%20(Ireland)%3C%2Fstrong%3E%0D%3Cbr%3EMade%20her%20Test%20rugby%20bow%20for%20Ireland%20against%20England%20in%202015%2C%20having%20played%20for%20four%20years%20in%20the%20capital%20with%20Abu%20Dhabi%20Harlequins%20previously.%0D%3C%2Fp%3E%0A
THE%20STRANGERS'%20CASE
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COMPANY PROFILE
Name: HyperSpace
Started: 2020
Founders: Alexander Heller, Rama Allen and Desi Gonzalez
Based: Dubai, UAE
Sector: Entertainment
Number of staff: 210
Investment raised: $75 million from investors including Galaxy Interactive, Riyadh Season, Sega Ventures and Apis Venture Partners
Benefits of first-time home buyers' scheme
- Priority access to new homes from participating developers
- Discounts on sales price of off-plan units
- Flexible payment plans from developers
- Mortgages with better interest rates, faster approval times and reduced fees
- DLD registration fee can be paid through banks or credit cards at zero interest rates
UAE%20SQUAD
%3Cp%3EMuhammad%20Waseem%20(captain)%2C%20Aayan%20Khan%2C%20Aryan%20Lakra%2C%20Ashwanth%20Valthapa%2C%20Asif%20Khan%2C%20Aryansh%20Sharma%2C%20CP%20Rizwaan%2C%20Hazrat%20Billal%2C%20Junaid%20Siddique%2C%20Karthik%20Meiyappan%2C%20Rohan%20Mustafa%2C%20Vriitya%20Aravind%2C%20Zahoor%20Khan%20and%20Zawar%20Farid.%3C%2Fp%3E%0A
UAE currency: the story behind the money in your pockets
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Hot%20Seat
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Volvo ES90 Specs
Engine: Electric single motor (96kW), twin motor (106kW) and twin motor performance (106kW)
Power: 333hp, 449hp, 680hp
Torque: 480Nm, 670Nm, 870Nm
On sale: Later in 2025 or early 2026, depending on region
Price: Exact regional pricing TBA
Nick's journey in numbers
Countries so far: 85
Flights: 149
Steps: 3.78 million
Calories: 220,000
Floors climbed: 2,000
Donations: GPB37,300
Prostate checks: 5
Blisters: 15
Bumps on the head: 2
Dog bites: 1
PAST 10 BRITISH GRAND PRIX WINNERS
2016 - Lewis Hamilton (Mercedes-GP)
2015 - Lewis Hamilton (Mercedes-GP)
2014 - Lewis Hamilton (Mercedes-GP)
2013 - Nico Rosberg (Mercedes-GP)
2012 - Mark Webber (Red Bull Racing)
2011 - Fernando Alonso (Ferrari)
2010 - Mark Webber (Red Bull Racing)
2009 - Sebastian Vettel (Red Bull Racing)
2008 - Lewis Hamilton (McLaren)
2007 - Kimi Raikkonen (Ferrari)
What is the FNC?
The Federal National Council is one of five federal authorities established by the UAE constitution. It held its first session on December 2, 1972, a year to the day after Federation.
It has 40 members, eight of whom are women. The members represent the UAE population through each of the emirates. Abu Dhabi and Dubai have eight members each, Sharjah and Ras al Khaimah six, and Ajman, Fujairah and Umm Al Quwain have four.
They bring Emirati issues to the council for debate and put those concerns to ministers summoned for questioning.
The FNC’s main functions include passing, amending or rejecting federal draft laws, discussing international treaties and agreements, and offering recommendations on general subjects raised during sessions.
Federal draft laws must first pass through the FNC for recommendations when members can amend the laws to suit the needs of citizens. The draft laws are then forwarded to the Cabinet for consideration and approval.
Since 2006, half of the members have been elected by UAE citizens to serve four-year terms and the other half are appointed by the Ruler’s Courts of the seven emirates.
In the 2015 elections, 78 of the 252 candidates were women. Women also represented 48 per cent of all voters and 67 per cent of the voters were under the age of 40.
Bio:
Favourite Quote: Prophet Mohammad's quotes There is reward for kindness to every living thing and A good man treats women with honour
Favourite Hobby: Serving poor people
Favourite Book: The Alchemist by Paulo Coelho
Favourite food: Fish and vegetables
Favourite place to visit: London
