The mother of a young boy with a rare genetic condition is encouraging people to “share their smile” as part of a new photographic project to raise awareness of the disease.
Em Ray's son Sam, 6, has Angelman syndrome, a complex genetic disorder that primarily affects the nervous system and occurs in one in around 15,000 people.
It is associated with delayed development, problems with speech and balance, intellectual disability and sometimes seizures. People with the syndrome often smile and laugh frequently.
I invite everyone here in Dubai to join this great cause and take this opportunity to meet and smile with this little boy who will for sure, light up your day and remind you what a simple smile can do
Gisele Clark,
Hilton Dubai The Walk
It is this sunny disposition which has inspired Ms Ray’s photo project, her second, which asks people to be photographed with Sam doing hobbies or tasks they enjoy.
“My first photo project was him meeting other people of determination and pets of determination,” she said, speaking on International Angelman Syndrome Day on Tuesday.
“Then this year, probably a few weeks ago, I decided maybe we could change the focus slightly," said Ms Ray, a photographer and a teacher who takes the pictures herself.
"So the idea is share your smile. So if you have a hobby or job you really enjoy, that makes you smile, consider sharing that with Sam.”
Offers have come flooding in, from people with various popular hobbies such as yoga, horseriding, dancing and tennis, as well as some more unusual ones from cinema fans.
At the weekend Sam met and was pictured with members of the UAE Garrison of the 501st Legion, Niima Outpost of Rebel Legion, and Rub Al-Kahli Spire of The Dark Empire.
The groups of Star Wars fans troop, or turn out in costume, to support charities and other good causes. Their appearances are strictly voluntary and they are not for hire.
“We dress up as the bad guys from Star Wars. The motto of our group is 'bad guys doing good',” said Jonathan Howell-Jones, 51, from the UK, commanding officer of the UAE Garrison of the 501st Legion.
The garrison is the largest in the region, with more than 15,000 members around the world, including from the UAE, the UK and Poland.
“We are very much community-focused. We love Star Wars, obviously, but we like to share it with the community and do things in different ways,” said Mr Howell-Jones.
“Where it has been possible, we have tried to troop to support local charities for events. Covid has obviously restricted this. We still try to do things positively, just not Covid-positively. It has been very limited recently. But we are always looking for more opportunities.”
Beatriz Manzano, who troops as Emperor Palpatine, said the legion was happy to support the project and got as much out of it as Ms Ray and Sam.
“You cannot imagine how I felt when Sam connected with me. I felt I could reach the sky,” said Ms Manzano, who is from Spain and has lived in the UAE since 2008.
“I just wanted to pause and linger in that moment. And then it happened again, and again and again and slowly he started to connect with all of us and it was nothing but joy and souls connecting with smiles.
“It made us feel happy, making us feel we can be of service.”
Other participants of the photo project have included Gisele Clark, hotel manager at Hilton Dubai The Walk, who had all her staff dress in blue for the shoot.
“Sam is really such a special young boy. The moment he entered our hotel with that big smile on his face we all felt the warmth and need to smile back. He brings such a positive energy with him,” she said.
“I invite everyone here in Dubai to join this great cause and take this opportunity to meet and smile with this little boy who will, for sure, light up your day and remind you what a simple smile can do. “
Anyone interested in taking part can get in touch with Ms Ray via Instagram.
UAE v IRELAND
All matches start at 10am, and will be played in Abu Dhabi
1st ODI, Friday, January 8
2nd ODI, Sunday, January 10
3rd ODI, Tuesday, January 12
4th ODI, Thursday, January 14
The 24-man squad:
Goalkeepers: Thibaut Courtois (Chelsea), Simon Mignolet (Liverpool), Koen Casteels (VfL Wolfsburg).
Defenders: Toby Alderweireld (Tottenham), Thomas Meunier (Paris Saint-Germain), Thomas Vermaelen (Barcelona), Jan Vertonghen (Tottenham), Dedryck Boyata (Celtic), Vincent Kompany (Manchester City).
Midfielders: Marouane Fellaini (Manchester United), Axel Witsel (Tianjin Quanjian), Kevin De Bruyne (Manchester City), Eden Hazard (Chelsea), Nacer Chadli (West Bromwich Albion), Leander Dendoncker (Anderlecht), Thorgan Hazard (Borussia Moenchengladbach), Youri Tielemans (Monaco), Mousa Dembele (Tottenham Hotspur).
Forwards: Michy Batshuayi (Chelsea/Dortmund), Yannick Carrasco (Dalian Yifang), Adnan Januzaj (Real Sociedad), Romelu Lukaku (Manchester United), Dries Mertens (Napoli).
Standby player: Laurent Ciman (Los Angeles FC).
MATCH INFO
England 19 (Try: Tuilagi; Cons: Farrell; Pens: Ford (4)
New Zealand 7 (Try: Savea; Con: Mo'unga)
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
INDIA SQUAD
Virat Kohli (capt), Rohit Sharma, Shikhar Dhawan, KL Rahul, Vijay Shankar, MS Dhoni (wk), Kedar Jadhav, Dinesh Karthik, Yuzvendra Chahal, Kuldeep Yadav, Bhuvneshwar Kumar, Jasprit Bumrah, Hardik Pandya, Ravindra Jadeja, Mohammed Shami
UAE squad
Ali Kashief, Salem Rashid, Khalifa Al Hammadi, Khalfan Mubarak, Ali Mabkhout, Omar Abdelrahman, Mohammed Al Attas (Al Jazira), Mohmmed Al Shamsi, Hamdan Al Kamali, Mohammad Barghash, Khalil Al Hammadi (Al Wahda), Khalid Eisa, Mohammed Shakir, Ahmed Barman, Bandar Al Ahbabi (Al Ain), Adel Al Hosani, Al Hassan Saleh, Majid Suroor (Sharjah), Waleed Abbas, Ismail Al Hammadi, Ahmed Khalil (Shabab Al Ahli Dubai) Habib Fardan, Tariq Ahmed, Mohammed Al Akbari (Al Nasr), Ali Saleh, Ali Salmeen (Al Wasl), Hassan Al Mahrami (Baniyas)
The Pope's itinerary
Sunday, February 3, 2019 - Rome to Abu Dhabi
1pm: departure by plane from Rome / Fiumicino to Abu Dhabi
10pm: arrival at Abu Dhabi Presidential Airport
Monday, February 4
12pm: welcome ceremony at the main entrance of the Presidential Palace
12.20pm: visit Abu Dhabi Crown Prince at Presidential Palace
5pm: private meeting with Muslim Council of Elders at Sheikh Zayed Grand Mosque
6.10pm: Inter-religious in the Founder's Memorial
Tuesday, February 5 - Abu Dhabi to Rome
9.15am: private visit to undisclosed cathedral
10.30am: public mass at Zayed Sports City – with a homily by Pope Francis
12.40pm: farewell at Abu Dhabi Presidential Airport
1pm: departure by plane to Rome
5pm: arrival at the Rome / Ciampino International Airport
UAE currency: the story behind the money in your pockets
Mountain%20Boy
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ELIO
Starring: Yonas Kibreab, Zoe Saldana, Brad Garrett
Directors: Madeline Sharafian, Domee Shi, Adrian Molina
Rating: 4/5
The biog
Alwyn Stephen says much of his success is a result of taking an educated chance on business decisions.
His advice to anyone starting out in business is to have no fear as life is about taking on challenges.
“If you have the ambition and dream of something, follow that dream, be positive, determined and set goals.
"Nothing and no-one can stop you from succeeding with the right work application, and a little bit of luck along the way.”
Mr Stephen sells his luxury fragrances at selected perfumeries around the UAE, including the House of Niche Boutique in Al Seef.
He relaxes by spending time with his family at home, and enjoying his wife’s India cooking.
MATCH INFO
Champions League quarter-final, first leg
Tottenham Hotspur v Manchester City, Tuesday, 11pm (UAE)
Matches can be watched on BeIN Sports
Killing of Qassem Suleimani
COMPANY%20PROFILE
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What it means to be a conservationist
Who is Enric Sala?
Enric Sala is an expert on marine conservation and is currently the National Geographic Society's Explorer-in-Residence. His love of the sea started with his childhood in Spain, inspired by the example of the legendary diver Jacques Cousteau. He has been a university professor of Oceanography in the US, as well as working at the Spanish National Council for Scientific Research and is a member of the World Economic Forum’s Global Future Council on Biodiversity and the Bio-Economy. He has dedicated his life to protecting life in the oceans. Enric describes himself as a flexitarian who only eats meat occasionally.
What is biodiversity?
According to the United Nations Environment Programme, all life on earth – including in its forests and oceans – forms a “rich tapestry of interconnecting and interdependent forces”. Biodiversity on earth today is the product of four billion years of evolution and consists of many millions of distinct biological species. The term ‘biodiversity’ is relatively new, popularised since the 1980s and coinciding with an understanding of the growing threats to the natural world including habitat loss, pollution and climate change. The loss of biodiversity itself is dangerous because it contributes to clean, consistent water flows, food security, protection from floods and storms and a stable climate. The natural world can be an ally in combating global climate change but to do so it must be protected. Nations are working to achieve this, including setting targets to be reached by 2020 for the protection of the natural state of 17 per cent of the land and 10 per cent of the oceans. However, these are well short of what is needed, according to experts, with half the land needed to be in a natural state to help avert disaster.
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KILLING OF QASSEM SULEIMANI
How to turn your property into a holiday home
- Ensure decoration and styling – and portal photography – quality is high to achieve maximum rates.
- Research equivalent Airbnb homes in your location to ensure competitiveness.
- Post on all relevant platforms to reach the widest audience; whether you let personally or via an agency know your potential guest profile – aiming for the wrong demographic may leave your property empty.
- Factor in costs when working out if holiday letting is beneficial. The annual DCTM fee runs from Dh370 for a one-bedroom flat to Dh1,200. Tourism tax is Dh10-15 per bedroom, per night.
- Check your management company has a physical office, a valid DTCM licence and is licencing your property and paying tourism taxes. For transparency, regularly view your booking calendar.
The specs
- Engine: 3.9-litre twin-turbo V8
- Power: 640hp
- Torque: 760nm
- On sale: 2026
- Price: Not announced yet
Libya's Gold
UN Panel of Experts found regime secretly sold a fifth of the country's gold reserves.
The panel’s 2017 report followed a trail to West Africa where large sums of cash and gold were hidden by Abdullah Al Senussi, Qaddafi’s former intelligence chief, in 2011.
Cases filled with cash that was said to amount to $560m in 100 dollar notes, that was kept by a group of Libyans in Ouagadougou, Burkina Faso.
A second stash was said to have been held in Accra, Ghana, inside boxes at the local offices of an international human rights organisation based in France.
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