Category Archives: Stories of Hope

Stories

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.

Ta’alouf teacher thrives in challenging times

The world fell into the grips of the COVID-19 pandemic and Ms Rehad had to continue the Ta’alouf Teachers Training program online and translate her newly honed skills working from home and conducting classes remotely to assist all the children of determination in her classroom.

A testament to her determination, Ms Rehad implemented the Ta’alouf components of global best practice methods, and she was able to achieve great results by working seamlessly in partnership with parents to meet the needs of students of determination in a holistic manner.

A wide range of resources and technology has provided the students at the school with a structured inclusion program that enhances their performance and provides teachers with various tools to engage students of determination.

Thanks to completing the Ta’alouf program, Al Hikmah Private School is fully inclusive, has flourished despite the challenges, and firmly developed the confidence of teachers to engage and meet the needs of students of determination.

Naya’s strength is regained to fight cancer

Having been diagnosed with acute blood cancer (leukemia) in 2017, 5-year-old Naya had undergone a full round of chemotherapy and was receiving maintenance treatment in Syria although she and her family were living in the UAE. As her condition was stable, she would regularly travel back and forth to see her doctors but since February 2020, due to COVID-19 restrictions, she was unable to travel to maintain her therapy. Unfortunately, during this period her father was made redundant making the situation very difficult for the family.

By May 2020 Naya was admitted to the emergency room after suffering from severe symptoms from her illness such as constant headaches, fatigue, fever and nausea. Through further clinical investigation and blood results it was revealed she had relapsed and needed to begin a new chemotherapy plan urgently.

The young girl’s medical team are familiar with Al Jalila Foundation’s A’awen program and submitted an application to support her case and Naya was able to receive the much needed treatment.

Naya has completed her treatment plan and is now preparing to travel to India to receive a bone marrow transplant in which her brother will be the donor.

It is thanks to the support of our donors that Al Jalila Foundation is able to offer life-saving treatment to young patients like Naya. To see how you can be a part of making a difference in patients’ lives please click here.