Category Archives: Stories of Hope

Stories

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.

Mother finds hope to fight breast cancer

When Melany (39) discovered she had breast cancer, like many others, she was completely overwhelmed by the diagnosis. As she sought the appropriate medical treatment she discovered she was pregnant and despite the disease she was overjoyed to welcome a new baby.

Even as a strong young woman, the treatment plan would not be straight forward as she was now considered a ‘high risk pregnancy’ and her first priority was to protect her baby. In addition to their growing family she had no idea how they would be able to afford the full treatment plan.

Through faithfully researching ways to make it all possible the family found the support they so desperately needed from Al Jalila Foundation and Melany was admitted to Dubai Hospital in mid July where she was able to undergo lifesaving surgery to remove the cancerous tumor. During that same hospital visit, Melany delivered a healthy baby boy through a caesarean section to ensure the newborn’s safety.

Melany’s husband, Eduard, expressed, “On behalf of my whole family I offer much gratitude to Al Jalila Foundation for helping my wife and our baby. The team showed us great compassion and never hesitated to help us in our time of need. We felt comforted by a great family here in UAE. Truly you are a great Foundation with a big heart.”

Melany continues on the road to recovery with her supportive husband and strong baby boy.

Research investigates links between sleep and depression

According to the World Health Organization depression, a mental disorder accompanied by low self-esteem, loss of interest and low energy, continues to be on the rise globally.

Unfortunately, current treatment methods are only effective on 50% of patients and even for those who do respond well it can take weeks or months to see any improvement.

With new therapeutic avenues needed, Al Jalila Foundation research grant recipient Dr Dipesh Chaudhury from New York University Abu Dhabi conducted a study ‘Sleep less smile more: understanding the cellular mechanism of sleep deprivation-induced rapid reversal of depression’ to tackle depressive disorders.

Sleep deprivation has been effective in rapidly alleviating depressive symptoms in around 70% of patients who are resistant to medication. However, it is not a viable long-term strategy. This study investigates how sleep deprivation alleviates depression symptoms in rodents using the chronic social defeat stress paradigm; special focus was given to the neurophysiological changes in neural circuitry involved in the circadian system and sleep-wake centres of the brain.

Scientists have researched how you sleep but the data on why we need it is still not clear. Studies like this bring us closer to finding the answers to many mental health issues. To learn more about this study please click here.

Researching the effects water-pipe smoke on heart health

Cardiovascular disease continues to be the leading cause of death and disability in the world today. According to the World Heart Federation 17.5 million people globally die every year from cardiovascular disease and studies have identified it is a one of the primary reasons of death in the UAE, with 30% of fatalities attributed to the disease.

Professor Abderrahim Nemmar from United Arab Emirates University lead an experimental investigation on water-pipe smoke (Shisha) induced cardiovascular pathophysiologic effects and the influence of smoke exposure, flavourings and possible protective effect of Gum Arabic.

It is estimated that more than 100 million people world-wide use water-pipe smoking and is a major form of smoking in the Middle East. Despite its widespread use, only a few studies to date have documented the harmful cardiovascular consequences of water-pipe smoking. With such high consumption rates, experimental studies investigating the mechanisms underlying the cardiovascular effects of water-pipe smoke are much needed.

The team has demonstrated that exposure to water-pipe smoke increased blood pressure and thrombosis, and induced cardiac oxidative stress, DNA damage and fibrosis. The effects of occasional versus regular smoke and flavoring have not been studied before and this study assessed the possible palliative effects of a commonly used natural antioxidant agent, viz Gum Arabic on the cardiovascular effects of water-pipe smoke.

Little philanthropists and Math stars

11-year-old Raghav Krishna and 8-year-old Madhav Krishna are two inspirational brothers living in Dubai who have a passion to make a difference in the lives of children of determination so they too can live life to the fullest and reach their full potential.

These extraordinary siblings are champions in mental math calculations and prize winners at national and international competition levels and are eager to help others by using their mental calculation skills.

Although 2020 brought many challenges with social distancing these young boys found the ideal platform to use their talents to fulfill their ambition. They set up a YallaGive campaign to raise funds for Al Jalila Foundation’s Ta’alouf (“harmony” in Arabic) program that empowers children of determination by equipping teachers and parents with the necessary skills to enable them to flourish.

Through the online fundraising campaign potential donors can simply set up a virtual meeting with the siblings to pose mathematical questions and the brothers will perform instant calculations. The donors are encouraged to contribute to the charity initiative based on the brothers’ performance.

Their campaign has been so successful that in less than 2 months the brothers have almost reached their fundraising goal of AED 25,000.

To support these little philanthropists, click here.