Lack of UAE data means further Spinal Muscular Atrophy research is needed



An absence of up-to-date data and research into Spinal Muscular Atrophy in the UAE makes it difficult to compare like-for-like international figures.

Anecdotally, American doctors now working in the UAE with patients with complicated genetic health conditions have said it is more common here, in their experience.

The most recent study into national prevalence was published almost 20 years ago, in 1998.

Research into the pattern of major congenital malformations was conducted in 24,233 consecutive live and stillbirths at Corniche Hospital in Abu Dhabi.

Between 1992 and 1995, a total of 401 babies, including 289 Arabs, were seen with major malformation.

Single gene disorders accounted for 24 per cent of cases, with 76 per cent due to autosomal recessive disorders.

The researchers observed three cases of type 1 Spinal Muscular Atrophy, born to first cousins from the UAE.

They concluded that their study was very close to representing the true incidence of congenital abnormalities in the whole country, as they had investigated 98 per cent of deliveries at the Abu Dhabi hospital, the only maternity clinic in the capital at the time.

According to Dubai's Centre for Arab Genomic Studies, there are more than 270 genetic diseases prevalent in the UAE and the average rate of cousin marriages across the country varies from between 40 and 60 per cent.

Cousins have one eighth of their genes in common, meaning any child they have together would have a 12.5 per cent higher chance of having a genetic disease.

Measures to reduce the number of "bad genes" in the Emirati population include premarital screening, prenatal diagnosis and preimplantation genetic diagnosis (PGD).

The specs

Engine: 3.0-litre six-cylinder MHEV

Power: 360bhp

Torque: 500Nm

Transmission: eight-speed automatic

Price: from Dh282,870

On sale: now

Match info

Australia 580
Pakistan 240 and 335

Result: Australia win by an innings and five runs

BLACKBERRY

Director: Matt Johnson

Stars: Jay Baruchel, Glenn Howerton, Matt Johnson

Rating: 4/5

Financial considerations before buying a property

Buyers should try to pay as much in cash as possible for a property, limiting the mortgage value to as little as they can afford. This means they not only pay less in interest but their monthly costs are also reduced. Ideally, the monthly mortgage payment should not exceed 20 per cent of the purchaser’s total household income, says Carol Glynn, founder of Conscious Finance Coaching.

“If it’s a rental property, plan for the property to have periods when it does not have a tenant. Ensure you have enough cash set aside to pay the mortgage and other costs during these periods, ideally at least six months,” she says. 

Also, shop around for the best mortgage interest rate. Understand the terms and conditions, especially what happens after any introductory periods, Ms Glynn adds.

Using a good mortgage broker is worth the investment to obtain the best rate available for a buyer’s needs and circumstances. A good mortgage broker will help the buyer understand the terms and conditions of the mortgage and make the purchasing process efficient and easier. 

MATCH INFO

Juventus 1 (Dybala 45')

Lazio 3 (Alberto 16', Lulic 73', Cataldi 90+4')

Red card: Rodrigo Bentancur (Juventus)

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.

if you go

The flights Fly Dubai, Air Arabia, Emirates, Etihad, and Royal Jordanian all offer direct, three-and-a-half-hour flights from the UAE to the Jordanian capital Amman. Alternatively, from June Fly Dubai will offer a new direct service from Dubai to Aqaba in the south of the country. See the airlines’ respective sites for varying prices or search on reliable price-comparison site Skyscanner.

The trip 

Jamie Lafferty was a guest of the Jordan Tourist Board. For more information on adventure tourism in Jordan see Visit Jordan. A number of new and established tour companies offer the chance to go caving, rock-climbing, canyoning, and mountaineering in Jordan. Prices vary depending on how many activities you want to do and how many days you plan to stay in the country. Among the leaders are Terhaal, who offer a two-day canyoning trip from Dh845 per person. If you really want to push your limits, contact the Stronger Team. For a more trek-focused trip, KE Adventure offers an eight-day trip from Dh5,300 per person.

Top tips

Create and maintain a strong bond between yourself and your child, through sensitivity, responsiveness, touch, talk and play. “The bond you have with your kids is the blueprint for the relationships they will have later on in life,” says Dr Sarah Rasmi, a psychologist.
Set a good example. Practise what you preach, so if you want to raise kind children, they need to see you being kind and hear you explaining to them what kindness is. So, “narrate your behaviour”.
Praise the positive rather than focusing on the negative. Catch them when they’re being good and acknowledge it.
Show empathy towards your child’s needs as well as your own. Take care of yourself so that you can be calm, loving and respectful, rather than angry and frustrated.
Be open to communication, goal-setting and problem-solving, says Dr Thoraiya Kanafani. “It is important to recognise that there is a fine line between positive parenting and becoming parents who overanalyse their children and provide more emotional context than what is in the child’s emotional development to understand.”

US federal gun reform since Sandy Hook

- April 17, 2013: A bipartisan-drafted bill to expand background checks and ban assault weapons fails in the Senate.

- July 2015: Bill to require background checks for all gun sales is introduced in House of Representatives. It is not brought to a vote.

- June 12, 2016: Orlando shooting. Barack Obama calls on Congress to renew law prohibiting sale of assault-style weapons and high-capacity magazines.

- October 1, 2017: Las Vegas shooting. US lawmakers call for banning bump-fire stocks, and some renew call for assault weapons ban.

- February 14, 2018: Seventeen pupils are killed and 17 are wounded during a mass shooting in Parkland, Florida.

- December 18, 2018: Donald Trump announces a ban on bump-fire stocks.

- August 2019: US House passes law expanding background checks. It is not brought to a vote in the Senate.

- April 11, 2022: Joe Biden announces measures to crack down on hard-to-trace 'ghost guns'.

- May 24, 2022: Nineteen children and two teachers are killed at an elementary school in Uvalde, Texas.

- June 25, 2022: Joe Biden signs into law the first federal gun-control bill in decades.

The Specs

Engine 3.8-litre, twin-turbo V8

Transmission: eight-speed automatic

Power: 582bhp (542bhp in GTS model)

Torque: 730Nm

Price: Dh649,000 (Dh549,000 for GTS) 

What is a robo-adviser?

Robo-advisers use an online sign-up process to gauge an investor’s risk tolerance by feeding information such as their age, income, saving goals and investment history into an algorithm, which then assigns them an investment portfolio, ranging from more conservative to higher risk ones.

These portfolios are made up of exchange traded funds (ETFs) with exposure to indices such as US and global equities, fixed-income products like bonds, though exposure to real estate, commodity ETFs or gold is also possible.

Investing in ETFs allows robo-advisers to offer fees far lower than traditional investments, such as actively managed mutual funds bought through a bank or broker. Investors can buy ETFs directly via a brokerage, but with robo-advisers they benefit from investment portfolios matched to their risk tolerance as well as being user friendly.

Many robo-advisers charge what are called wrap fees, meaning there are no additional fees such as subscription or withdrawal fees, success fees or fees for rebalancing.

SPECS

Engine: Two-litre four-cylinder turbo
Power: 235hp
Torque: 350Nm
Transmission: Nine-speed automatic
Price: From Dh167,500 ($45,000)
On sale: Now

PROFILE OF STARZPLAY

Date started: 2014

Founders: Maaz Sheikh, Danny Bates

Based: Dubai, UAE

Sector: Entertainment/Streaming Video On Demand

Number of employees: 125

Investors/Investment amount: $125 million. Major investors include Starz/Lionsgate, State Street, SEQ and Delta Partners

Bio

Age: 25

Town: Al Diqdaqah – Ras Al Khaimah

Education: Bachelors degree in mechanical engineering

Favourite colour: White

Favourite place in the UAE: Downtown Dubai

Favourite book: A Life in Administration by Ghazi Al Gosaibi.

First owned baking book: How to Be a Domestic Goddess by Nigella Lawson.

Company profile

Company name: Fasset
Started: 2019
Founders: Mohammad Raafi Hossain, Daniel Ahmed
Based: Dubai
Sector: FinTech
Initial investment: $2.45 million
Current number of staff: 86
Investment stage: Pre-series B
Investors: Investcorp, Liberty City Ventures, Fatima Gobi Ventures, Primal Capital, Wealthwell Ventures, FHS Capital, VN2 Capital, local family offices

Sri Lanka v England

First Test, at Galle
England won by 211

Second Test, at Kandy
England won by 57 runs

Third Test, at Colombo
From Nov 23-27

Ant-Man and the Wasp

Director: Peyton Reed

Starring: Paul Rudd, Evangeline Lilly, Michael Douglas

Three stars

Gully Boy

Director: Zoya Akhtar
Producer: Excel Entertainment & Tiger Baby
Cast: Ranveer Singh, Alia Bhatt, Kalki Koechlin, Siddhant Chaturvedi​​​​​​​
Rating: 4/5 stars

The five pillars of Islam

1. Fasting

2. Prayer

3. Hajj

4. Shahada

5. Zakat

Lewis Hamilton in 2018

Australia 2nd; Bahrain 3rd; China 4th; Azerbaijan 1st; Spain 1st; Monaco 3rd; Canada 5th; France 1st; Austria DNF; Britain 2nd; Germany 1st; Hungary 1st; Belgium 2nd; Italy 1st; Singapore 1st; Russia 1st; Japan 1st; United States 3rd; Mexico 4th

Living in...

This article is part of a guide on where to live in the UAE. Our reporters will profile some of the country’s most desirable districts, provide an estimate of rental prices and introduce you to some of the residents who call each area home.

DEADPOOL & WOLVERINE

Starring: Ryan Reynolds, Hugh Jackman, Emma Corrin

Director: Shawn Levy

Rating: 3/5

Company Profile

Company name: Yeepeey

Started: Soft launch in November, 2020

Founders: Sagar Chandiramani, Jatin Sharma and Monish Chandiramani

Based: Dubai

Industry: E-grocery

Initial investment: $150,000

Future plan: Raise $1.5m and enter Saudi Arabia next year

RESULTS

5pm Maiden (PA) Dh70,000 (Dirt) 1,400m

Winner AF Nashrah, Tadhg O’Shea (jockey), Ernst Oertel (trainer)

5.30pm Maiden (PA) Dh70,000 (D) 1,400m

Winner Mutaqadim, Riccardo Iacopini, Ibrahim Al Hadhrami.

6pm Maiden (PA) Dh70,000 (D) 1,600m

Winner Hameem, Jose Santiago, Abdallah Al Hammadi.

6.30pm Maiden (PA) Dh70,000 (D) 1,600m

Winner AF Almomayaz, Sandro Paiva, Ali Rashid Al Raihe.

7pm Handicap (PA) Dh70,000 (D) 1,800m

Winner Dalil Al Carrere, Fernando Jara, Mohamed Daggash.

7.30pm Handicap (TB) Dh70,000 (D) 1,000m

Winner Lahmoom, Royston Ffrench, Salem bin Ghadayer.

8pm Handicap (PA) Dh70,000 (D) 1,000m

Winner Jayide Al Boraq, Bernardo Pinheiro, Khalifa Al Neyadi.

PROFILE OF HALAN

Started: November 2017

Founders: Mounir Nakhla, Ahmed Mohsen and Mohamed Aboulnaga

Based: Cairo, Egypt

Sector: transport and logistics

Size: 150+ employees

Investment: approximately $8 million

Investors include: Singapore’s Battery Road Digital Holdings, Egypt’s Algebra Ventures, Uber co-founder and former CTO Oscar Salazar

Naga

Director: Meshal Al Jaser

Starring: Adwa Bader, Yazeed Almajyul, Khalid Bin Shaddad

Rating: 4/5