Category Archives: Stories of Hope

Stories

The gift of hearing transforms sisters forever

9-year-old Noor Afzaal was born into a silent world as she suffered from profound hearing loss, but thanks to receiving a cochlear implant at the age of 6, with the help of Al Jalila Foundation, her communication developed remarkably and today she can hear and talk like other children her age. It is such a joy for her parents to listen as Noor recites the Quran.

The Afzaal family were exploring improved hearing treatments for three of their daughters. They had learned of the cutting-edge cochlear implant which would be a dream come true but, due to financial capabilities, the high cost of the cochlear implant made this option out of reach for the family. Eager to provide their children with the best chance at living a happy, fulfilled life they contacted Al Jalila Foundation with the hope to give their daughters the cochlear implant.

In collaboration with Al Jalila Foundation, a decision was made to first perform a cochlear implantation on the youngest daughter, Noor, as the younger the patient the greater the impact and the sooner positive results would be seen.

Noor showed great progress, so much so, that after leaving kindergarten she enrolled into mainstream school entering Year 1 at the same age and with the same opportunities as other children her age.

Noor’s mother gratefully expressed: “When we got approval for the cochlear implant procedure for our daughters, it was the happiest day of my life! This implant is a priceless gift and has changed our daughters’ lives, and our family’s, forever.”

After seeing the success of Noor’s implant, Al Jalila Foundation also committed to provide the cochlear implant for Noor’s older sisters, Aisha and Rimsha, as both girls were relying on lip reading to communicate. Since the life-changing cochlear implant the girls are all thriving, and their world has been forever changed.

Watch the Afzaal family story of hope here.

Golf star donates winnings to empower children of determination

Golf is a key driver of charitable giving around the world with large philanthropic contributions, including those from professional tournaments, that make giving to charity a huge part of the sport. Many of the golf clubs in the UAE and globally recognised tournaments have dedicated proceeds to Al Jalila Foundation healthcare programs over the years.

This year, we are delighted to have gained recognition from one of the world’s greatest up and coming young professional golfers, Renato Paratore, who donated GBP 10,000 of his European Tour winnings to our Ta’alouf program to empower children of determination.

We recently welcomed Renato to Al Jalila Foundation to have his name engraved on Bassmat Rashid Bin Saeed donor recognition wall alongside fellow champions of hope. Renato is the first professional golfer to put his name on the first-of-its-kind wall of fame’ leaving his mark on the future of medicine.

Famous sports personalities have been known to make significant charitable contributions and it is inspiring to see the next generation of golf superstars continue in this tradition. Leading by example is truly what it is all about and we wish Renato many more victories on the golf course and look forward to welcoming him to Al Jalila Foundation again.

Learn more about Bassmat Rashid Bin Saeed here.

Emirati autism expert paves the way for future advancements

According to the World Health Organization an estimated one in 160 children worldwide has an Autism Spectrum Disorder (ASD).

Based on these statistics, there is a need to better understand the unique genetic causes of Autism as well as the pattern of treatment sought by parents of children with the condition. Al Jalila Foundation invested in ‘A prospective study of UAE children with Autism Spectrum Disorder’ with leading expert Dr Ammar Albanna from Al Jalila Children’s Specialty Hospital.

The pioneering study paved the way for future comprehensive studies that will assist in identifying the genetic underpinning of ASD which will have significant implications, including prevention, healthcare systems planning, and individualised treatment.

Dr Ammar commented “The grant was instrumental in shaping a comprehensive research-based ASD program at Al Jalila Children’s.  The deep phenotyping translates to high-quality assessments following rigorous protocols, which serves as immediate clinical gain. Scientific research is key to improving clinical services, as well as scientific discovery.”

In addition to bolstering the Emirati research community, this grant gained attention in scientific publications, peer-reviewed journals, conferences, and opened collaborations with institutions in the UAE and beyond.

Watch here as Dr Ammar Albanna and his colleagues at Al Jalila Children’s as they commemorate Autism Awareness Month and #StandUpForBlue.

Nour is driven by her passion to serve the nation

Al Jalila Foundation is committed to supporting deserving Emirati medical professionals, who pursue education with respected international institutions with the aim to transfer global best practices to the UAE.

Nour Alloghani had graduated from Royal College of Surgeons Ireland and Al Jalila Foundation awarded her a Fellowship in Histopathology Lab (Cancer) at Beaumont Hospital, Ireland.

Through the Fellowship Nour was able to carry out research in oncology with one of the best pathologists in Ireland. The research allowed her to use the theory she had learned in medical school in a practical environment while gaining invaluable skills.

For Nour studying medicine was a dream come true. “I always loved medicine and my passion grew when my father developed a heart condition and I promised myself to do my best as a doctor and give back to the UAE community. Studying abroad was an important experience and I feel privileged to receive the Fellowship and continue my journey though medical school. Living in Ireland changed my skills as a doctor, and I feel confident working with patients from different backgrounds and ethnicities.”

Since completing the Fellowship Nour was invited to publish her research on the Arab Youth Research platform and awarded IP certification from the ministry of economy in the UAE.

Hamza has a bright and independent future on the horizon

10-year-old Hamza was born with a congenital abnormality that affected his limbs. The condition also interfered with his motor skills and hampered his independence as he grew. Throughout Hamza’s life, the only treatment accessible to him to improve his condition was plastic ankle foot orthotics which he was rapidly outgrowing, and they were no longer providing him with sufficient support.

In 2020 Hamza’s doctor identified that he was a good candidate for bilateral lower limb ankle foot orthotics. Eager to give his son greater independence and freedom, Hamza’s father approached Al Jalila Foundation as the cost of the orthotics was beyond his budget. Their greatest wish to see their child become independent and move on his own was becoming a reality.

Hamza’s orthotic fitting was a great success and several months on from the procedure the neutral alignment to his ankles is providing him with controlled range of motion. The right guidance and strengthening from physiotherapy will ensure he does not develop further deformity or weakness affecting his mobility.

“I would like to thank Al Jalila foundation for helping my son become more mobile. Hamza is very happy, and for us as parents there is no greater blessing and relief than knowing that Hamza can live independently in the future.”

Discovering the unknown in neurological disorders

With an increasing global population and greater life expectancy, the diagnosis of neurological disorders, like Parkinson’s disease is on the rise.

Al Jalila Foundation awarded a research grant to renowned scientist Dr M Emdadul Haque from UAE University to study ‘Parkin in cancer and neurodegeneration: critical role of parkin as E3 ubiquitin ligase and redox molecule’.

Parkin/PINK1 insufficiency may cause accumulation of damaged mitochondria. However, there is no mitochondrial accumulation in patients’ brains and mouse models. The question is simple: is it true that they are removing abnormal mitochondria? “Autophagy” is one of the essentials in life phenomena, especially for cell survival. Insufficient mitophagy produces oxidative stress and energy crisis in cells and finally leads to cell death or cancer. Thus, it is important to question whether Parkin and PINK1 have a central role in conducting mitophagy. In the clinical aspect, they are involved in several major serious diseases that many people are suffering from.

By understanding what is truly happening on the surface of mitochondria around Parkin (and PINK1), the findings will unveil a series of flow which causes dopaminergic cell death and tumorigenesis in cells. The results have the potential to change the notion of “mitophagy process” and provide the cause-directed therapeutic strategy for several major diseases.

Al Jalila Foundation funds promising research to give hope to people and advance cures. To learn more about our funded research please click here.

Wendelin runs to ‘get children back on their feet’

Since inception, Al Jalila Foundation has encouraged thousands of motivated individuals and teams to raise funds by taking part in sports challenges. These endurance runs, triathlons, marathons and more have been instrumental to raising awareness and providing hope to patients suffering from chronic illnesses.

One of our greatest athletic Champions of Hope, Wendelin Lauxen, has once again completed the 7 Emirates Run to ‘get children back on their feet’.

In 2010 driven by his passion for running, Wendelin, holder of Guinness World Record for ‘Fastest time to complete a marathon on all 7 continents’, ran 575 kms solo across the UAE in 12 days. A chance meeting in 2013 with a little boy with severe congenital limb deformities and the allure of the UAE’s landscape inspired Wendelin to launch the 7 Emirates Run in partnership with Al Jalila Foundation.

Wendelin has organised the 7 Emirates Run under the slogan “Run for Help, Run for Health, Run for Fun”, and over 7 years has raised an astonishing AED 1.5 million for Al Jalila Foundation, to support life-changing surgery and postoperative medical support for children who suffer from deformities or amputation.

Giving children the gift of mobility is all the reward Wendelin could hope for, however, on completion of his recent solo 7 Emirates Run, he was recognised by the Dubai Sports Council for extraordinary athletic achievements and charitable endeavours.

Parent develops skills to empower child of determination

Through the Ta’alouf Parents Training Program, Al Jalila Foundation works to empower parents to bring out the greatest potential in their children of determination.

Although 2020 was a challenging year and parents training was held virtually, parents like Rola were only too eager to jump on the opportunity to enroll as with her usually very demanding schedule she was able to attend at home.

As a mother of a child of determination, Rola had adapted to life and developed her skills to better care for her son, understand his needs and build on his strengths to bring out his greatest potential. The Ta’alouf program solidified her understanding and put a great deal of attention on many new helpful tools and strategies that she had not yet discovered. Not only that but she now understood completely how and why these tools would benefit both her son and her family.

Rola expressed: “The experience was fun and rich with information for parents, during which I discovered that no matter how different the diagnosis is, there are some things in common between the children of determination. I also benefited from the program by learning the different ways to deal with people with autism spectrum disorders and understanding there are different levels of these disorders”.

The Heroes of Hope are unstoppable

In our mission to transform lives, Al Jalila Foundation connects with community partners to support our work and fulfill our collective goals. In 2020, we are proud to have partnered with Heroes of Hope, a not-for-profit group founded by Hollie Murphy to develop and support the sporting, social and interpersonal skills for people of determination.

In providing diverse sports programs year after year and attending events, Heroes of Hope has built a strong supportive community for athletes of determination and their families. The organisation serves athletes as young as 4, however the focus is on individual athlete progression across many sporting disciplines and ability levels which caters to all ages including adults.

Heroes of Hope works tirelessly to create opportunities and pathways for all of their athletes to reach their sporting potential and accomplish their own individual dreams. Their athletes have many achievements to date including having 11 athletes of determination compete in the Garmin Quest Hatta challenge, where for the first time the nation witnessed these athletes compete and finish a very gruelling adventure race. Additionally, many of their athletes have competed in the Special Olympics World Games and its founder, Hollie Murphy, hosted the Inclusion Games in 2018.

In order to continue to grow the Heroes of Hope community and offer the much-needed support to their athletes, they have invited partners from corporates to individuals to get involved and contribute. Through their HopaSports fundraising page the Heroes of hope have already raised AED 30,000. But this is just the beginning. With much bigger goals on the horizon, they need all the help they can get and you can donate here to help the team move mountains for athletes of determination.

Leading scientist investigates novel cancer treatments

According to the World Health Organization, cancer is the second leading cause of death globally with about 1 in 6 deaths due to cancer. Each year, approximately 300,000 children alone are diagnosed with cancer. However, there is hope, as with access to quality treatment, more than 80% of children with cancer can survive, living full and healthy lives. It is this that drives Al Jalila Foundation to invest in groundbreaking cancer research.

Novel targeted therapeutic agents are desperately needed and our highly respected research grant recipient, Professor Thomas E Adrian from Mohammed Bin Rashid University of Medicine and Health Sciences, is doing just that by conducting a cancer research study to discover ‘novel drug combinations to treat cancer’.

The study is looking at frondoside A which is a glycoside that blocks growth and inhibits the invasion of cancers into other tissues, which is what makes cancers deadly. Recent work has shown that cancers arise in cancer stem cells and that eradication of these stem cells is essential to cure the cancer. Findings have revealed that when treating leukemias or pancreatic cancers with frondoside A, it stimulates a stem-cell pathway (NF-kB pathway) that these stem cells use for survival.

When combining an inhibitor of the NF-kB pathway drug (andrographolide) together with frondoside A the effects were found to be dramatically better than either drug alone at killing all the cells including the cancer stem cells.

To learn more about this and other Al Jalila Foundation research please click here.