Mina's Story - Boureki

Board Member

Living with beta thalassaemia, Gabriel is driven towards ensuring that all individuals with thalassaemia have an equal access to quality thalassaemia care and support in the UK and abroad. He is also passionate in ensuring that the burden of the condition is well articulated, represented and understood by health care professionals and decision makers. Gabriel sits on the National Haemoglobinopathy Panel and represents the UKTS at the Specialised Health Care Alliance in addition to heading the only All-Party Parliamentary Group for thalassaemia.

In his professional life, Gabriel is a business entrepreneur who founded two companies in real estate and ethically sourced environmentally friendly items.

Board Member

Ravi is the chair for the society and has been a member of the board for over 3 years. In his previous capacity of being a Treasurer his focus was to ensure that all finances and bookkeeping is well maintained and transparent.

Living with Beta Thalassaemia Major his whole life Ravi is very passionate about the charity and the good it can do for other patients. His main goals whilst being chair are to:

Drive awareness across the UK and overseas of Thalassaemia.
To do further outreach to help patients and be a support mechanism and social platform.
To have UKTS become a financially independent charity.

Ravi professionally is a qualified accountant with a keen eye on numbers, he has brought those strengths to the charity. Socially, Ravi has completed four BHF London to Brighton Cycle Rides and is learning to play the guitar.

Mission Statement

As the national charity for thalassaemia in the UK with over 45 years of experience in supporting patients, their families and the network of medical and educational professionals involved in their care. As the first port of call for all things thalassaemia, our over-riding aim is to improve the lives of all those living with the condition.

Board Member

Oddy is a 61-year-old mother of three beautiful grown children, one of whom is a patient. She is also a successful businesswoman who, as soon as she was contacted, jumped in with both feet to do all she could for the society. With her help this year, the society was able to pull off a grand gala and awards function and the massive refurbishment being celebrated. She is now firmly committed to the cause and brings a breath of fresh air to the board.

Ambassador

Yiannis has historically served as a proud board member of UKTS while working in London as a financial advisor. Having returned to Cyprus, Yiannis continues to actively engage with Thalassaemia-related matters and events and aims to foster even stronger bonds between UKTS and local organisations for the benefit of Thalassaemia patients worldwide.

Board Member

Ashkaan Bandoui is a 31-year-old thalassaemia patient, originally from Iran but living in London since he was two months old. He majored in graphic design at university but is currently working as an estate agent. He also enjoys playing the Iranian drum called the DAF which originates from Kurdistan and has been performing with a band for over nine years. Ashkaan joined the board of trustees in 2017 and has been a great addition to the team to date.

Board Member

My name is Zehra Gokturk. I am a 49 year old wife and proud mum to two boys. My career as a Turkish Medical Interpreter has spanned for over 30 years. Having lived with Thalassaemia, I made the decision to join the team as an Ambassador and outreach worker for the UKTS, with the aim of raising awareness about Thalassaemia to other patients and their families.

Patron

Nina Wadia is a British actress, known for playing Zainab Masood in the BBC soap opera EastEnders, Mrs Hussein in the Open All Hours and for starring in the hit BBC Goodness Gracious Me. Additionally, Wadia played an important role in the Hindi-language romantic comedy Namaste London.

Nina is also committed in supporting the various campaigns spearheaded by the society towards raising awareness of the condition and the fact that it is a genetically inherited disorder which can be prevented.

Patron

Peter has starred in the world’s most successful musicals of all time and his acting career is now in its 40^th year. Amongst numerous other roles, he was the Phantom in Sir Andrew Lloyd Weber’s Phantom of the Opera. More recently in 2018, he played Ahmed Qurie in OSLO for which he was nominated for an Olivier award. He has had various TV roles but is most famous for playing Chris Theodopoulopoudos in Birds of a Feather and even today it is shown on TV. Peter is a director of The Royal Theatrical Fund and also teaches in schools, colleges and universities across the UK.

Peter has supported UKTS for over 25 years and now as a patron he is keen to hear about all aspects of the new medical research currently being undertaken. He is particularly excited about the huge advances in gene therapy and feels they offer real hope to patients with thalassaemia.

Patron

Kypros Kyprianou is Group Chief Executive for the Theo Paphitis Retail Group, including brands Ryman, Robert Dyas, Boux Avenue and London Graphic Centre, all of which are owned by retail entrepreneur and businessman Theo Paphitis. Kypros has a degree in Actuarial Science from City University and is a qualified banker, having gained this whilst spending the first 13 years of his career at the Bank of Cyprus, UK. In 2004, Kypros left the Bank to join Theo Paphitis’ Group as Commercial Director. A leap into the unknown has been very rewarding for Kypros, with retail acquisitions, disposals, a start-up and growing existing businesses all featuring in his time at the Group. Today the Group has a combined total of around 350 stores, E-commerce sites and 4,200 staff, serving more than 28 million customers a year.

Kypros’ main passion away from work is football, being Chairman and now a trustee of the community’s leading youth football club, Omonia Youth FC for over a decade. Kypros is married to Fanoulla and has three sons. He is a committed supporter of the society and in helping to raise awareness of the society across his network

Patron

Tonia Buxton is a Greek Cypriot television presenter and author. She is the host of the Discovery Channel Travel & Living show My Greek Kitchen and is also the author of several publications. Although extremely busy balancing her career and family life, Tonia is determined to support the charity in raising awareness of the inherited disorder.

Patron

Adil Ray OBE is best known as the star and creator of the hit BBC1 sitcom Citizen Khan. More on his work can be found via Adil Ray OBE .

Adil is happy to support the society in its future work towards educating the public and improving treatment for patients living with thalassaemia.

Staff

Romaine’s introduction to thalassaemia came when her only child was diagnosed with the major form of the disorder in 1989. Once she realised that it was an inherited condition which was virtually unknown and was preventable, she threw herself into promoting awareness of the condition and became the lead advocator for adequate patient care in her birth country, Trinidad and Tobago. Despite a hectic schedule of managing a mortgage department for one of the largest banks in the Caribbean, she served as the President of the Society of Severe and Inherited Blood Disorders in Trinidad and Tobago for a number of years.

In 2004, she made a huge career change, moving across to the diplomatic field to join the team at the Trinidad and Tobago High Commission in London. She also joined the UK Thalassaemia Society as a volunteer and served on their board of Trustees from 2010 to 2018. Romaine continued her advocacy role throughout the years leading several delegations to Trinidad and Tobago and arranging and accompanying a TIF delegation to some of the South American countries and Nepal. She also served as a board member for the Thalassaemia International Federation from 2017-2020

In 2018, she assumed the role as the Executive Director for the United Kingdom Thalassaemia Society.

Staff

Hello, I’m Jessamy. I joined Team UKTS as Projects Coordinator in July 2023.

My background is in administration, project support and stakeholder engagement. My introduction to thalassaemia and the work of the UK Thalassaemia Society came while providing support to a long-running partnership between the NHS Sickle Cell and Thalassaemia Screening Programme, the UK Thalassaemia Society and the Sickle Cell Society, focussed on improving families’ experience of antenatal and newborn screening.

I’m delighted to be a member of the dynamic and caring team here at UKTS HQ and look forward to working with them to serve the community.

Ambassador

Sophia is a Fashion Marketing graduate from the University of Leeds. She has previously worked for a luxury skincare and lifestyle company where she specialised in communications and public relations.

She is quite passionate about film photography, screenwriting, thrifted fashion and all things wellbeing. An avid yogi and advocate for meditation, pursuing a healthy lifestyle is something very important to her. Currently she is undertaking an extracurricular course teaching and practicing the core skills used in a counselling relationship.

The UK Thalassaemia Society is a charity very close to Sophia’s heart and family. Honoured to be a child raised by a parent with Thalassaemia major, she has first-hand experience witnessing how the charities research impacts the lives of patients and their families.

Ambassador

Bharat Nathwani is one of the founding members of the society. He was introduced to thalassaemia when his daughter Mena was diagnosed shortly after birth. Bharat served as a board member for many years, also assisting with the bookkeeping and accounts.

He has also been a great support to the younger parents over the years, sharing his experiences of caring for a child from birth to adulthood, especially during the years when little of nothing was known about the condition itself. Bharat is an accountant by profession.

Ambassador

My name is Devesh, I’m 38 and from London but now live in Leicester with my family. I have Thalassaemia Major with the extra collectibles such as Osteoporosis and Heart Failure.

Growing up I always tried to keep my Thalassaemia Major on the back burner and always away from friends. I learnt that as I grew up this wasn’t always possible particularly when I started university in 2003.

I wanted some ‘normality’ in my life and be like everyone else and this meant not being very good when it came to my chelation therapy. I would miss it probably 90% of the time and before I knew it I was walking home from lectures and I collapsed suddenly. I didn’t know it at the time but was going through heart failure due to iron overload.

Turned out that my heart function was about 30% and I was lucky to be alive. I found that by trying to be like everyone else I ended up neglecting the part of my life that I felt was not very important.

I fought hard with the help of the NHS to remove all the excess iron that I stand here a better person. I learnt a big lesson the hardest way possible was that I cannot hide my Thalassaemia but it does not define who I am… I am more!

I restarted my life after the heart failure by going to university and then getting a job with an events company as a social media specialist. I’ve worked very hard to over the past two years to build up two successful businesses. My first is ‘Dippers’ and we provide access to hydrotherapy pools for adults with long term health conditions.

Due to Covid-19 and the lockdown ‘Dippers’ has taken a backseat so with my spare time I decided to launch my next venture which is ‘Ego & Co.’ and now create bespoke t-shirts with funny sayings on them. These t-shirts have been a big part of my time in and out of hospital and many doctors would come especially to see what t-shirt I was wearing each day.

Ambassador

Neelam Thapar has Beta Thalassaemia major. She attends Whittington Hospital for her treatment combining this with working full time.

Neelam works at the London Metropolitan University where she is the Head of Careers and Employability Service, leading a team of staff delivering careers information, advice and guidance, employer engagement and embedding employability within learning and teaching. She is a careers practitioner with substantial experience in service management, strategy and delivering careers guidance to students and professionals. Neelam has a MSc in Education and Training, Diploma in CEIAG and a Diploma in Personal Performance Coaching and is interested in education and social mobility.

She has been a trustee of the UKTS in the past with specific responsibility for co-leading an Asian Awareness Campaign. She has been a peer reviewer to The Cochrane Cystic Fibrosis and Genetic Disorders Group and has also had chapter published in a book; Before Birth; Living with a congenital condition: the views of adults who have cystic fibrosis, sickle cell anaemia, Down’s syndrome, spina bifida or thalassaemia (Routledge;2017).

Ambassador

Gina is a 61 year old proud mother of three beautiful children and sister of the late beloved Costa Kountourou who worked tirelessly for the cause. She is an Executive Assistant in the city and has worked in the Insurance industry for 10 years. Prior to this post, she worked in an Independent Girls School as School Secretary/Registrar and part time teacher in Design and Textiles. With over 15 years experience in fundraising and charitable work, Gina also has vast experience in Event planning. She is passionate about the work she does and is very much looking forward to sharing her expertise with UKTS and helping to make a difference.

Staff

Ira has extensive experience in management, procurement, corporate services, accounts payable and budgets. She began her career as an administrator for a market leading automotive company and eventually took the helm of the Procurement and Export Import department of the company as the Department Head . In order to raise her family and accompany her husband each time he was posted abroad as part of his British diplomatic role, she took a career break and kept herself busy with charity and a part time jobs each time they relocated. One such posting was to the British High Commission Kuala Lumpur. (BHCKL). She took the role as the Finance Manager at BHCKL for the Foreign, Commonwealth and Development Office (FCDO) – Asia Pacific in Kuala Lumpur, Malaysia. Under her direction, BHCKL’s Finance and Compliance performance and KPI ratings were transformed from ‘poor’ to ‘excellent’. She was also the recipient of the “P2P Excellence Award” for BHCKL and also help them achieve top leader board status amongst FCDO’s overseas High Commissions/Embassies. She also received numerous staff awards from BHCKL and FCDO Asia Pacific Directorate during her employment.

Ira is an Indonesian living in the UK and keen to learn about Thalassaemia and to support the society’s awareness campaigns. She is committed to supporting the team at UKTS, ensuring that the office operates at its highest standards. Ira is also a certified First Aider, she speaks 3 languages (English, Indonesian and Malaysian) and has networks in Indonesia, Malaysia, Singapore, and some Asian countries which will benefit UKTS with its research, programme and networking.

Board Member

Christine Christodoulou

Specialist service providers

Web Design & Support

Ambassador

Living with a thalassaemia herself, Roanna Maharaj is a seasoned patient advocate who believes that the patient’s voice needs to be included throughout the continuum of care from preventative medicine to potentially curative therapies. She is passionate about education and addressing the health inequities facing the thalassaemia and rare disease community.

Roanna has dedicated much of her life to empowering and educating patients and families around the world to become active participants in managing their health and developing innovative tools which enhance communication and improve the patient-health care professional relationship. She serves on respective health and advisory committees/ boards on a national and international level.

Roanna is the Vice Chair of the UK Thalassaemia Society leading on all aspects of Public Health, Education and Patient Advocacy. She serves on respective health and advisory committees/ boards such as the National Haemoglobinopathy Panel, Clinical Reference Group (CRG) for haemoglobinopathies, UK Forum for Haemoglobin Disorders, Haemoglobinopathy Peer Review Steering Committee, Sickle Cell and Thalassaemia Screening Programme, National Institute for Care Excellence, NHSBT FAIR (I and II), Prescription Charges Coalition amongst others on a national and international level.

She holds a Bachelor of Science with honours in Psychology and a Master of Science with distinction in Health Psychology and is currently undertaking a PhD and doctoral training in the field.

Ambassador

We would like to introduce Muhammed Sarhan Mahmood who is one of the youngest members to join team UKTS as an ambassador. Sarhan, his preferred name, lives in Bury, Manchester with his parents, two elder brothers and baby sister. Like most twelve year old’s, he loves sports and tries as best as he can to enjoy most of the activities. In particular he enjoys swimming, football, basketball, cricket and Brazilian jiu-jitsu (BJJ).

He attends Derby High School in Bury and is looking forward to continuing on to furthering his studies in Global Warming . He also loves creating things and is an avid TIK TOKKER with a growing number of followers.

Ambassador

My name is Despo and I am mum to two wonderful children, a son and daughter. I work full time in a school in Harrow. My son was diagnosed with Thalassaemia Major in 1999 and attends Whittington Hospital.

It was a shock finding out about Thalassaemia and having to start his transfusions when he was just 5 months old. Despite this, my son has developed into a lovely, confident young man, achieving a 1^st at Cambridge University in Chemical Engineering. He plays for the local football team and is also a member of the university’s team.

My husband and I are also fortunate enough to have had wonderful support from family and friends, through the tough times and the good times. I would like to pass this along by becoming an ambassador with the UKTS to help support any new parents and family members.

Ambassador

Hi all, my name is Sajid Hussain, I am 43 years old and I live in Wakefield, Yorkshire. Growing up with Thalassaemia was terribly isolating for me as I was the only Thalassaemia patient in Wakefield. Luckily through the UKTS I met many other Thalassaemia patients, not only in this country, but from all around the world! I became friends with many and they continue to support me throughout my life which I appreciate greatly.
I currently work with young people in schools and the local community to try and improve emotional wellbeing and mental health. I am lucky to have such a rewarding job which I also enjoy doing, and the young people I support keep me on my toes! I am a great advocate of patient empowerment in managing Thalassaemia and I try to encourage a proactive approach if someone asks me for my advice.It’s imperative as Thalassaemia patients we try and control the things we can control. I have taken part in many peer reviews up and down the country, attended countless conferences and been on advisory boards too.
In my spare time, I am a massive film nerd and try to watch as many films as I can at the cinema. I missed the cinema greatly during the lockdowns. I also enjoy reading (when I can focus), football and travelling. Please be sure to have a chat with me if our paths ever cross! 🙂

Ambassador

Hello, my name is Shaista Ismail, I am 30 years old and I live in Leeds/Bradford

Thalassaemia can be very challenging however I believe with love, support and understanding it can be regulated.

Having been involved in voluntary charity work and organising activities for the community these experiences allow me to adapt and change within my surroundings. Having studied childcare, psychology and graduating in animal management I have gained a better understanding of my illnesses and struggles, these experiences and knowledge have allowed me to help others with managing and understanding their illnesses. I highly believe in self-help but I also believe if you need help you should ask.

When I have some spare time I like to read and listen to music. I love spending time with my friends, family and animals and love to gain as much knowledge as I can.

As a patient representative please feel free to approach or message me on ambassador@ukts.org

Ambassador

Hello! I’m Kirthana Bala and I’m 18 years old. I was diagnosed with Beta Thalassaemia Major at 3 months old and have been undergoing monthly blood transfusions ever since.

Being a first-generation student, I grew up watching my parents struggle to understand a condition they had never heard of before. Nonetheless, I am proud to assure them that I can manage my condition whilst living a “normal” life. In my free time, I enjoy reading and completed a Grade 8 Diploma in Bharathanatiyam (a type of South Indian classical dance). I am also heading into first year of medical school.

My aim as an ambassador is to raise awareness of Thalassaemia, especially within the South Asian (Tamil) community where it is considered a taboo topic. I would also love to meet other Thalassaemia patients and relate with them!

Ambassador

Mr Simko Ahmed joined teamUKTS as our newest ambassador

Simko is a fine artist and writer born in Sulaymaniyah, a city in Kurdistan. He is the first Kurdish national to be granted Japanese citizenship after moving to Tokyo in 1996.

Aside from being widely recognised as an exhibited artist, he is a qualified civil engineer and a board member of the Japanese international Art Association of JAALA (Japan, Asia, Africa and Latin America Art Association). He is also in charge of curating and selecting art works from the Middle East and Latin America for Jaala Biennale which is held in the Tokyo Metropolitan Art Museum and is a founder of Baran Art Association.

Simko has also held over 14 solo art shows so far in Japan, Iraq, Canada, USA, UK, European and Asian countries. He has also participated in over 50 international art shows and Biennale in Tokyo and Seoul Metropolitan art museum and Asia’s famous Kwangju Biennial 2000 ” Man + Space in South Korea.

When he first moved to Japan in 1996, while working for a Japanese NGO called “Peace Winds Japan “. He also worked with other international humanitarian NGOs, helping refugees and people in need around the world from Asia to the Balkans, Kurdistan, Kosovo, Albania, Sierra Leone, Liberia, Japan, Afghanistan and Pakistan by creating workable assistance programmes for war-torn zones and natural disasters areas.

Simko, combines art with human rights issues, he explained that art and human rights could be linked together like “fingers and rings”. The pain he witnessed and experienced over the years prompted him to use his paint brushes as a medium of expression and the positive feedback and love generated from his creations has given him the drive to continue. His works are all originals and tell stories of his own life experiences.

Simko, moved to the UK in 2012, working in a full-time post, and his most recent show was at the NSH Gallery in East London. As a published author, his most recent book, Sparrows of Paradise, was published in 2018. Some of his earlier books are Spring Never Dies, published in 2010 and Colours of Paradise, published in 2011.

During his work, Simko has been in contact with people living with thalassaemia and understands what it is like for some, especially in some areas where there are problems accessing optimal care. He has been an advocate over the years and would now like to formalise it by becoming an ambassador for the charity to lend his voice towards spreading awareness of thalassaemia, encouraging everyone to check their carrier status and take control of their future.

Simko also speaks 4 languages (English, Kurdish, Arabic and Japanese) and has networks in Middle East which will benefit UKTS with its programme and networking.

Member’s Stories

A series of experiences from those affected by thalassaemia.