Category Archives: Stories of Hope

Stories

Emirati scholarship recipient advances UAE capabilities

In May 2020, in response to the coronavirus pandemic and to strengthen the national capabilities to deal with viral diseases, Al Jalila Foundation offered an exclusive international postgraduate scholarship to UAE nationals to undertake studies at world class international universities in the medical fields of: virology, genetics and genomics, nanotechnology, stem cells, immunology and biomedical data science.

Driven by widespread interest from the medical community several applications were received from the brightest minds in the country and after a rigorous review process, the successful candidate Abdulrahman Alzarooni received the scholarship to study for a Master of Medical Genetics and Genomics (MSc Med Sci) at the University of Glasgow, UK.

Abdulrahman, who holds Bachelor of Science in Biology, has always been fascinated by how DNA carries information to create our bodies and only small mutations can cause genetic diseases. Through projects in sequencing DNA and researching stem cells, he realised how the field of genetics can contribute to diagnosing and treating diseases fueling his interest in the field of genetics, gene editing, gene therapy, and biotechnology.

Abdulrahman hopes to become an expert in his field and bring his knowledge and expertise to the UAE, “This scholarship from Al Jalila Foundation is an incredible opportunity for me to be part of the research community and an active contributor to the biomedical sector in my country.

Most therapies prescribed for genetic diseases treat the symptoms and not the cause and my dream is to contribute in designing therapies for patients who suffer from diseases with no available therapy giving them a new life without lifelong medication or lifestyle restrictions.”

Pritvik is the UAE’s first live donor transplant pediatric patient

In June 2020, the story of young kidney patient Pritvik touched the hearts of the nation as His Highness Sheikh Mohammed Bin Rashid Al Maktoum offered to support the family through this difficult time. Pritvik was born with small, partially functioning kidneys and in early 2020 suffered kidney failure and required immediate renal replacement therapy.

Pritvik is an exceptionally talented young boy; he is as an official affiliated researcher at Beyond Center, a published co-author on NASA’s Primer on Astrobiology and a World Science Scholar. However, his medical condition was taking a heavy toll on his school and research.

Pritvik’s father, Bhaskar Sinhadc, was identified as a successful donor match. The groundbreaking transplant was funded by Al Jalila Foundation and successfully carried out by a team of physicians from Al Jalila Children’s Specialty Hospital, Mohammed Bin Rashid University of Medicine and Health Sciences (MBRU) and Mediclinic Middle East, marking the UAE’s first pediatric kidney transplant from a live donor.

The operation, which has saved Pritvik’s life, is also expected to improve the quality of his life in the years ahead.

Dr Abdulkareem Sultan Al Olama, CEO, Al Jalila Foundation, said: “Through our A’awen program we are helping parents give their children the opportunity to undergo the latest medical procedures at world-class medical institutions, offering them renewed hope for their child’s future. It has been a privilege to be part of Pritvik’s inspirational story and we wish him a speedy recovery.”

Pritvik, who was named a UAE Ambassador of Organ Donation, said: “I have been lucky to have my father as my donor. However, there are many who need transplants to survive. I pledge to raise awareness on the crucial need for organ donation in saving lives of patients like me, who would otherwise not make it without a transplant.”

Watch Pritvik describe his experience in his own words here.

Shamsa makes a splash to beat cancer

11-year-old Emirati Shamsa AlMheiri recently lost her beloved grandfather to cancer and wanted to find a way to pay tribute to him. She decided a fitting tribute would be to raise awareness and funds for cancer research to improve the lives of patients suffering with the disease that cuts so many lives short.

In her quest, Shamsa came up with the brilliant idea to swim the equivalent of the English Channel 34kms over 10 days in her pool at home to raise funds for Al Jalila Foundation. She setup a fundraising campaign on YallaGive and rallied her friends and family to get behind her cause to support cancer research. After swimming over 2000 laps, approximately 200 laps a day, young Shamsa raised almost AED 18,000 smashing her initial target.

Shamsa spoke about her passion to complete this challenge, “Unfortunately, we all know someone who has been affected by this terrible illness. This cause is very close to my heart and I dedicate it to my Granddad Mekki Mahmoud Abdulla who changed my world and now I hope to change the world too. I know that one small act of kindness can create a ripple that can spread hope across the whole world.”

It is because of people like young philanthropist Shamsa, who want to do their part to make a difference, that we are able transform lives. In appreciation for Shamsa’s fundraising efforts, Al Jalila Foundation was delighted to add her name to Bassmat Rashid Bin Saeed donor recognition wall.

Student aims to become a doctor of the future

As a bright young student, Saad Syed was drawn to medicine and was overjoyed to learn he had been awarded a scholarship from Al Jalila Foundation to continue his studies at Mohammed Bin Rashid University of Medicine and Health Sciences (MBRU).

By attaining this scholarship, Saad can follow his passion for medicine and he finds himself developing every day. Saad’s medical student experience has truly enriched his life and encouraged him to develop life skills such as problem solving and empathy which has allowed his creativity to shine through.

At MBRU Saad has a rich student life and engages in several programs including the Summer Scholar’s program which allows students to explore their passions by participating in clinical observerships, clinical research and volunteering at local and international hospitals and institutes to broaden their vision of healthcare of today.

Through his experiences Saad recognised a large gap in the field of research and developed a strong passion for innovation. Saad hopes to work in the field of medical education and produce relevant research papers and is enthusiastic to take a proactive role in medicine.

“My ultimate goal is open but I believe that with technology advancing exponentially the roles of doctors will be vastly different from what they are today, and I hope to fulfill those responsibilities and expectations of the doctor of the future.”

Nahid inspires the community to support medical research

Nahid Al-Naqbi, a celebrated journalist for Al Bayan Newspaper and a recipient of the 2018 Al Jalila Foundation Rosalynn Carter Fellowship for Mental Health Journalism, is recovering from breast cancer thanks to receiving quality medical care and support.

Nahid’s journey has not been easy and whilst she does not define her life by her cancer – in Nahid’s words “Cancer was part of my life. But it is not my life.” – her diagnosis inspired her to be a passionate advocate for cancer research and access to quality care for cancer patients.

Through the newly launched Bassmat Rashid Bin Saeed giving campaign Nahid saw the perfect opportunity to champion medical research to save patients’ lives. Nahid rallied her high school friends ‘Girls of Khor Fakkan Class of 96’ and together they raised AED 20,000 to kick-start Nahid’s mission.

The ambassadors of hope paid a special visit to Al Jalila Foundation to make the donation and engrave their class name live on the donor recognition wall leaving their mark on the future of medicine.

Nahid’s work does not stop there, she is on a mission to reach zero cancer deaths by 2030 and has launched an ambitious YallaGive fundraising campaign to raise AED 500,000 to support breast cancer research in the UAE.

Follow Nahid’s inspiring journey on Instagram and support her #ZeroBy2030 campaign here.

Autism expert seeks innovative treatment methods

Autism spectrum disorder (ASD) is a growing health concern around the world and is estimated that it impacts 1 in every 58 children globally. Research indicates that the disease manifests very early in development which requires early diagnosis and intervention.

Dr Mohammed Uddin from Mohammed Bin Rashid University of Medicine and Health Sciences, an expert in the etiology of autism and neurodevelopmental disorder genetics, is leading a study to develop ‘An in vitro system to characterise recurrent pathogenic deletions in autism spectrum disorder’.

Each child impacted by autism carries a different genetic signature; therefore, a targeted personalised molecular approach is necessary. This research is immensely important to implement a translational core for autism genome and to guide personalised therapeutics. Dr Uddin hopes this study will be a step forward for genome sequencing projects and will enable the translation of clinical relevance of the mutated genes.

The team now have a comprehensive list of genes that are associated with ASD and have successfully completed gene editing experiments. Due to the relevant and important nature of the work, Al Jalila Foundation has funded this research to continue the process of conducting multiple characterisation experiments on the knockout CRISPR/Cas9 cell lines that can then be used by other scientists in the country.

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

Bismah’s life is powered by hope

At 4-years-old Bismah, a highly talented child, began to develop serious health problems and deteriorated to the point that she could no longer walk or play like other children. After admission to the hospital she was diagnosed with a very rare autoimmune connective tissue disease, juvenile dermatomyositis, in which only 1 to 4 cases occur per million children. As a connective tissue disease, if left untreated it can cause significant disability and high-risk mortality. Patients must undergo rigorous medical care under close supervision to stabilise their condition and support their recovery.

Coincidently, in addition to this rare disease she was also diagnosed with type 1 diabetes mellitus which too had developed complications and required vital treatment and care. The medical team at Al Jalila Children’s Specialty Hospital put together an extensive treatment plan for Bismah and Al Jalila Foundation provided the financial support the family needed to save their daughter’s life.

The family has expressed their gratitude: “We cannot say thank you enough for the support Al Jalila Foundation has been to our daughter. She has transformed from when she arrived at the hospital unable to stand and she then came back home running.”

Bismah is responding to the treatment well and is a happy care-free child.

Local diabetes research is vital to fight the disease

Despite the high prevalence of type 2 diabetes in the UAE, approximately 1 in 5 of the population suffers from the disease, epidemiological data about diabetes incidence and subgroups in the UAE in general, and particularly the Northern Emirates (Sharjah/Ajman), is very limited.

Al Jalila Foundation research grant recipient Professor Nabil Sulaiman from University of Sharjah is leading a pioneering local research study ‘All new diabetics in Sharjah & Ajman [ANDISA]: An epidemiological and genetic study toward individualized medicine (phase II)’ to find answers.

Clinical data such as the response of diabetes subgroups to different modes of treatment and the prevalence of diabetes complications in these subgroups have not been investigated yet.

This study aims to enroll new diabetic patients aged 13 to 65 years in Sharjah and Ajman to collect basic, clinical, genetic and immunological data from a newly diagnosed population of diabetics to improve diagnostic categorisation rates and develop personalised treatment.

This groundbreaking study represents the first step towards precision medicine in diabetes in the UAE. Through the findings it will provide better diagnosis and better personalised care for diabetic patients at a lower cost.

It is through investing in studies like this, Al Jalila Foundation aims to create a brighter future for diabetic patients.

To read more about this and other research click here.

Webinar empowers parents of children of determination

Among many of the challenges faced this year, education and distance learning has been one of the hardest. Hundreds of thousands of students in the UAE embarked on online learning for the first time, many of whom were children of determination who require a little extra care and support. This meant parents around the country desperately needed better tools and understanding to continue to support their children through these unprecedented times.

In line with the Ta’alouf program values to empower parents and teachers of children of determination, Al Jalila Foundation hosted a live webinar presented by Autism Specialist Teacher and Certified Trainer Shaikha Salem AlKaabi from Zayed Higher Organization for People of Determination. The webinar focused on exploring the most important strategies to help children with autism spectrum disorder adapt to their environment, including preparing a structured schedule and a productive routine for them while studying at home.

The webinar was attended by more than 350 parents from 17 countries all eager to do their best to support their children through home schooling.

Shaikha AlKaabi was encouraged by the participation and said: “These wonderful parents gained tangible benefits from the online workshop and can now use their skills to prepare activities so their children continue to flourish during these difficult times.”

Pink Ribbon Crafters paint the town pink

Pink Ribbon Crafters is a group of passionate volunteers and artisans who create handmade items from knitted toys, candles to jewellery sold in exchange for donations to support breast cancer research and patient treatment in the UAE. 100% of proceeds are donated to Al Jalila Foundation in partnership Brest Friends.

The volunteers, many of whom are breast cancer survivors, work tirelessly throughout #PINKtober to sell their goods online, setting up stalls at various venues, giving awareness talks and promoting their online fundraising campaign on YallaGive. In 2019 alone the Pink Ribbon Crafters raised AED 180,000 to fund patient treatment and invest in vital medical research to find a cure.

Lina El-Sharif, Co-Founder of Pink Ribbon Crafters and a 2-time breast cancer survivor, is passionate about helping fellow breast cancer patients on their road to recovery “The community created by this project is beyond magical. We have over 70 volunteers aged between 14 to 80 years old sharing one purpose: to help women battling breast cancer.”

Follow @PinkRibbonCrafters on social media to find out more about their #PINKtober activities and where you can buy pink handmade goods to give hope to breast cancer patients.