Magazine - UKTS

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.

Gabriel is the Chair of the United Kingdom Thalassaemia Society and has served the organisation for 11 terms. He has been instrumental in modernising the society’s values and ethos to ensure the UKTS is a reflection of all individuals living with thalassaemia throughout the UK.

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.

I like space and it just seemed the right thing to do. I quite like magic and love nature and growing things. Nature is my thing, I’ve got the green fingers off my family and it just seems right to put that in a planet poem about saving our world.

Building Bridges

The pandemic has split the world in half, leaving a wake of disconnection, whether with day-to-day interactions, in the classroom, workplace, or even at home. We could not physically contact each other, and it was harder for communities to connect together emotionally. I remember staring at the empty screens of ceiling fans instead of faces in school, reminiscing about the times when I could sit down and enjoy the company of friends. The dark forest environment with muddy waters symbolizes these feelings of loneliness and isolation during challenging periods; however, there is light starting to shine through as we find silver linings in interactions with those we love. Hands of love and care supply fresh, clean water, and civilizations rebuild bridges to meet the other side. The world is starting to revert to normal as communication between diverse populations revitalizes the community. As time heals bit by bit, my perspective toward the future metamorphizes into one of reconnecting, reaching out to others, and regaining lost experiences. Although these aspirations seem minuscule, the simple acts of slowing down, confiding in each other’s stories, listening, and understanding can truly impact times when we need compassion the most.

In this lazy afternoon, I think deeply about my nature. I don’t want to be rich, I don’t want to have much power, I don’t want to have many things. I just want to live happily with my family and hope everyone can be healthy.

From the perspective of hobbies, after a long period of home isolation due to coronavirus , although I was far away from the crowd, the time spent alone made me more immersed in the sky and nature. For the first time, I found that the plants and universe that could not speak were so charming, so it became a big hobby for me to enjoy the sky and the universe with a telescope during break time . And talking the those mushrooms and plants near little river is also a hobby of mine. From the perspective of dream, the pigeon in the upper right corner represents the hope that the world can be peaceful and united without war in the new year. The hand in the upper left corner is represented by three colors, which is also the hope that people of d ifferent skin colors and races can be united and friendly and that children will never be forced to leave their parents. The red line is the positive insight, which is an embodiment of energy which comes from blood. This painting depicts the Utopia in my eyes, with nature, hobbies, love, friendship ,peace and health all over the world.

Jump! Jump! Jump! Catch up our bright future! Stand on the top and aims high! Welcome the bright future with our big smile!

The grey side shows the lack of education avaliable to people all around the world.
The colourful side represents the kind of future I want to see when I’m older. This section shows that education and access to school is avaliable to anyone wishing to go. This reflects a “Whole New World”as it will allow new opportunities to people who come from disadvantaged backgrounds like my family. Education shaped the success that we have today and I want that for everyone in the future too.

I drew this picture to show the beauty of our world, which was forgotten by us because of the hardships we all went through during the last couple of years. When we are drowned by all of the bad news we hear on social media, and the personal issues in our lives, we tend to forget about all the wonders of our world, the greatest one of all being nature. The picture shows the smaller parts of nature, like the animals, flowers, and us – humans on the left, and the stunning sphere of our planet on the right. I really hope that just like me, with all the difficulties slowly retreating, many people all over the world will finally be able to sigh with relief, and let themselves look up, and see this precious planet with all of its colours.

This drawing is of a new world, where people broke through our limitations and created countries and cities outside of earth and in space. We will live in these bubbles and the roads are the tubes in the picture. I also made the buildings bright and shaped differently from modern building, because I believe the art styles will change in the future. Personally, this drawing shows me and lets me have hope for humanity, that we will explore and adventure more. I choose to draw this because the earth is dying, though we might be able to save it if we act, but if not I think we will start moving our cities into space. This reflects the topic “A Whole New World” because this is my idea of a whole new world, where things are different and new.

Title: Friends
Summary: In another world, I want to be able to understand what my dog Lucy is saying and feeling.

A Whole New World
Everyone is hoping for a new happy world without any trouble. A world with happiness and joy! The pandemic changed a lot in our life and caused us to stay at home the whole time. Due to that, the kids that were born just before covid or during covid didn’t get the chance to feel the no mask world! Lots of people are depressed because of many reasons, but the main reason is that their family is passing away. People around the world need support and happiness in their life to overcome sadness. They need a positive, cheerful, merry future that wouldn’t make anyone ever be sad again. This painting that I did is to give hope to the people who are having a miserable and dispirited life! I know that one
painting can’t make everyone joyful again, but all of us have a job to do to make the world a better place.

Title: Blind
Summary:
In another world, I hope I won’t be blinded by beautiful things in disguise. I hope everyone else around me won’t see the world through butterfly goggles.

I decided to do this 3D drawing to represent renewal, optimism and peace from the Coronavirus Pandemic and the unnecessary war in Ukraine. The Cherry Blossoms which was presented to United States by Japan after World War II represents hope and friendship. The boy and his dog represent enjoyment of life. The Big Ben represents time and grandness of human achievement. I am hoping my drawing overall demonstrates peace and prosperity for humanity.

Merhaba,
Benim adım IŞIKNAS,
Daha adil ve daha eşit bir dünya için hepimizin yapabileceği bir şeyler var. Bu dünyaya gelmiş her insanın mutlu olmaya hakkı var. Mutlu insanlar ne kadar artarsa dünya o kadar güzel bir yer olur.

Hello, My name is IŞIKNAS, There is something we can all do for a fairer and more equal world. Every human being born into this world has the right to be happy. The more happy people there are, the better the world will be.

When everything is over, I want to travel the world. And I’ll send a postcard to my mom and dad so they can travel the world with me.

I miss the old days when I can dress up and going to Disneyland with my friends and families to see my favourite princesses. During the pandemic lockdown period, everything was closed and we can only stay at home, meeting friends and families using Zoom. But I know on the other hand, the animals were having a great time. Without the human disruption, the whales can enjoy interact with each other in a quiet environment, the
penguins can explore more places around where they live and even can go fishing for twice a day. In this drawing, I wish the pandemic will end soon, and we can find a good balance and live together with the animals happily ever after.

In a whole new world, I hope I can see happy faces without mask for everyone. I love swimming, I love to go to the beach with my family. This is my father, mother, elder brother and me. I love to see my mother and she dresses up every day. She can remove her glasses and I think she is the most beautiful girl in the world.
I love my yellow shirt. Life is simple but difficult. In the whole new world, everyone can find their beautiful lifestyle.

Reflective explanation of Christian’s submission.
‘Once upon a time there was a boy called Christian and a dog. Christian was sitting by a river with lilly
pads, holding a ball…’
Christian’s dream is to have a dog and take it for walks, picnics, feed it, give it bones 🙂 etc…He
modelled from plasticine his story and a picnic with green pepper, some citrus some soup etc. There
is also red teleporting machine, which helps him to teleport where he wants: to the sea, back home
etc.
This dream come true will be a whole new life in a whole new world for Christian!

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.

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.

Dr Banaz Star-Shirko

An enthusiastic and energetic scientist with strong academic qualifications and a comprehensive set of personal and scientific skills.

Banaz completed two Masters degrees, one in Genetics, one in Medical Microbiology, and a PhD degree in Microbiology.

Banaz started her working life as a microbiologist scientist and lecturer overseas. She followed a classical scientific career until she took a break to move to the UK, start a family and look after her children.

In 2012, she completed her second MSc Medical Microbiology at the London School of Hygiene & Tropical Medicine. Her work focused on studying and applying classical molecular microbiology techniques.

In 2022, Banaz started two new posts. She was awarded the prestigious Daphne Jackson Fellowship and started her role as a research fellow at the London School of Hygiene & Tropical Medicine. Banaz joined the United Kingdom Thalassaemia Society and started her other post as a Scientific Coordinator in charge of research, publications and literature. She also speaks 3 languages (English, Kurdish and Arabic) and has networks in the Middle east which will benefit UKTS with its research, programme and networking.

My name is Nikolaos Deroukakis and I am 14 years old. I am of Cretan and Cypriot descent. I was born in England and my parents recounted that I could speak English and Greek fluently by age 3. I went to Norfolk Lodge nursery until I was four. After that I attended St John’s preparatory school where I achieved outstanding grades and developed my keen interest in mathematics and science, particularly physics. It was at this time that I began to love golf and now I play golf competitively for the Enfield golf club.

I began my secondary school education in 2019 and shortly after the coronavirus plagued our world. The covid lockdown was a tough time for all of us and negatively and positively impacted my life.

On a positive note, I developed an interest in computers and coding and I built on my python programming knowledge. This takes me to the present day where I am continuing to build on my skills. Currently, I am participating in the Duke of Edinburgh’s Award at my school. I chose the United Kingdom Thalassaemia Society because I have a passion for helping the local community and thalassaemia in prevalent in my community. I look forward to supporting the work of the charity and raising awareness of thalassaemia.

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.

Upon completing an MSc at the London School of Economics, Neelam worked in the City as an Investment Analyst for several years before moving across to the third sector. Ever since graduating, she has worked on a range of freelance writing projects for a variety of publications.

In April 2019, Neelam assumed the role of Medical Writer / Magazine Editor for UKTS (working on a freelance basis). She is responsible for creating and producing Thalassaemia Matters, the charity’s quarterly medical magazine. For each publication, this involves project planning its creation, securing stakeholder input, graphic design, writing content and final production. Neelam will research highly complex new medical treatments such as gene therapy and present the information in a way that is comprehensive and accessible to all.

Teresa Choudhary joined the UKTS team in January 2020.

She obtained her degree in Computer Science from the University of Greenwich and has worked as an IT consultant, nationally and internationally, for a wide range of companies including British Airways, GSK and Lockheed Martin.

She is married with four children and has also been actively involved in fundraising for their schools, holding both secretary and vice chair roles for the PTA. She also manages, in her spare time, to assist with the various activities of the local Brownies and Guides.

Teresa is passionate about education and will be working with schools, colleges, universities and community groups to spread awareness of thalassaemia.

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.

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!

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.

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

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! 🙂

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.

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.

Amanda Baez

It’s a “self portrait” basically showing what my life has been like, living with thalassemia major.

It’s been a lifetime of Doctors looking at, getting Blood drawn for testing each month, and getting transfusions, Iron deposits in my organs so I’ve been on Chelation therapy multiple times.

I used ball point pens, and watercolor. the whole thing is covered in a layer of hot glue, and also put into a custom-made frame made entirely by hand from hot glue, glass and cardboard.

Marathon Runner

Robert Fletcher, 48

Husband/ Father/ Police Officer

Hello everybody! My name is Robert, I am 48 years old and originally from Yorkshire, but have lived in Leicestershire since 1998 due to work and family commitments. Currently, I work as a Police officer for Leicestershire Police.

I have been married for just over 6 years to my wonderful wife, Maria Fletcher nee Gavriel. Some of you may already know her from when she undertook the role of committee secretary for the UKTS. During her two years working for the society, she organised many successful and profitable charity events.

I am a father to my fifteen year old teenage daughter and owner of three dogs and a cat, so you can only imagine what our home is like sometimes!

Since leaving the Army way back in 1997, I have been invested in my fitness. Prior to lockdown, I had been undertaking training at Leicester Kickboxing Club. Martial Arts is one of those exclusive sports that has changed my life and helped me to continuously learn about myself and other people. For the last four years I have been a member, training in K1 Dutch kickboxing style. Running and cycling are also a favourite pastime of mine. Recently, I have proudly completed a charity event raising money for the Motor Neurone Disease Association. Partaking in the ‘7in7’ challenge, which consists of running seven miles everyday for seven consecutive days, I ran a total of 49 miles.

One of the main reasons why I have decided to run the London Marathon for the UKTS is because of my wife Maria, who lives with thalassaemia major. Prior to meeting her, I had never heard of thalassaemia as well as being unaware of its further complications and how it impacts the day to day lives of sufferers. I have been truly inspired and privileged to see how Maria goes about maintaining some normality within her daily life. She attends many medical appointments and maintains and runs a busy home life; all with a smile and a positive can do attitude. Through Maria, I have become friends with some of the Greek Cypriot thalassaemic community. They have been my inspiration to get myself off the sofa, put my best running shoes on and get out there to raise as much money as possible because they all deserve the best quality of life. I have been truly humbled by their positivity and great sense of humour that derives through personal battles and ongoing adversity.

The only marathon I have ever ran was a half marathon back in 1991, in West Berlin. Aged 17 and a soldier. I remember my Platoon Sergeant the day before saying to me ‘Fletcher, make sure you are dressed in civilian kit and parade outside the guardroom prompt and sharp Sunday Morning! Someone’s dropped out through injury’. Back then, my training consisted of consuming less quantities of German beer than normal for a Saturday night.

Now it is not that easy. Simply looking at my trainers for too long will cause me to end up with blisters and break into a sweat. Anyway, it’s all in the planning, so I will be starting a structured training plan in June to get marathon fit for October 3rd and do the UKTS proud.

At the moment, I run about twice a week with the distance varying from 4 to 8 miles. I also mix some kickboxing training sessions into my routine that consist of skipping, shadow boxing and finishing off with punching and kick combinations on the punch bags.

I feel very honoured and privileged to represent and raise money for the UKTS during the London Marathon. Hopefully, you are there on the day to cheer me on, it would be great to meet you all after to celebrate!

I encourage you all to donate what you can, a little really goes a long way and I will be so grateful to every one of you.

Sree Marathon Bio 2021

Hi Everyone! My name is Sree Sarkar and I am a 35 year-old accountant who has been born and raised in London.
I am honoured to be running the London Marathon for UKTS. My sister has Thalassaemia major and I’ve grown up watching her deal with the challenges associated with this chronic disease. I’ve been fascinated at how her treatment has developed positively over the last three decades and I have seen first-hand how the advancement of treatment can change a patient’s daily life. The work that the UK Thalassaemia society do is so beneficial for both patients and their families, by providing information, raising awareness and funds for innovative research and new technologies.

My running journey started when I completed the couch to 5k a few of years ago and have been running fairly regularly ever since. I have not run anything longer than a half marathon, so this will be a challenge for me but one I am really looking forward to complete. It’s been on my bucket list for years! I run about 3-4 times a week, usually in a park – Burgess, Southwark and Richmond park are the ones where you are most likely to find me!

Meet Flavia!

Hello everyone, my name is Flavia, and I am a 41 year old international arbitration lawyer living in Brazil, Sao Paulo. My love for running begun in my teenage years and has been a part of my life ever since. To begin with, I was involved in track and field and then moved to long distance once I finished university. Having completed several marathons in Buenos Aires, New York, Paris and Chicago, I am thrilled to be able to include London to my list!

I am honoured to be running the virtual London Marathon for the UKTS. Prior to choosing to run for them, I had not known about the charity or the condition itself. It was only when a friend told me about the condition and the role which the society has played in the milestones being celebrated by patients globally, I recognised how important it was to support this charity raising funds and achieving my goal at the same time. I truly hope my fundraising can increase awareness of the condition, contribute to new research developments, and inspire others to fundraise too!

You can find me running in Ibirapuera Park, Sao Paulo three times a week.

Thank you, Flavia, from team UKTS!

Marathon Runner

Ward Stepman, 51

Husband/ Father/ Active role in biological crop protection and bumblebee pollination.

Hello everyone! I am Ward Stepman, a 51 year old who was born and raised in Belgium. Since 1991, I have been working for different companies active in biological crop protection and bumblebee pollination, spending 14 years working for the Biobest Group N.V based in Belgium. Privileged enough to travel extensively with this work, I have visited and lived in Belgium, Canada, the UK and I am now in Austria. I’m married to Marlene and have two children, my oldest is Helene aged 19 and Arno who is 17 years old.

I have been involved in sports for most of my life but my main focus is athletics. Living in the Austrian Alps allows me to partake in trail running which is a combination of running and hiking on differing land and gradients. Previously, I have completed some long runs, having participated in several half marathons and a 28k with 1500m elevation gain. The London Marathon however, is going to be my first ever full marathon!

For me running is the perfect way to switch off from everyday stresses especially when running through woods and in the mountains. Besides running, I’m a keen gardener and photographer so I have plenty to do to fill my free time.

My colleague and friend Julien Mourrut Salesse told me about the condition his brother-in-law Ashkaan Bandoui has and the opportunity to raise money and awareness by participating in the London Marathon. This is a fantastic opportunity to participate in something as spectacular as the London Marathon and raise money to help those with thalassaemia.

Together with Julien, we have already been able to collect quite some funds but it’s of course never enough to support an incredible and hardworking charity like the UKTS. To support me and the society, please donate by using the link below.

Please support UK Thalassaemia Society – UKTS on #easyfundraising, you can raise FREE donations when you shop online with over 5,000 retailers. A few retailers include Amazon, ASOS, M&S, Argos, Tesco, Boots, John Lewis and ebay! It’s simple and only takes 2 minutes to sign up! Plus, once you have raised your first £5, easyfundraising will match it!

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.

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.

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).

Priya is a healthcare professional who doesn’t have thalassaemia but pro-actively promotes thalassaemia and UKTS. Priya started at UKTS as an administrator and has past experience volunteering in University College London Hospital in the A&E ward. She currently works as a physician associate in a General Practice (GP) and likes to get involved in events.

My name is Tanya. I have Thalassemia Major and am also a Diabetic type 1. I am 48 years young.

I am lucky to be married to a supportive husband and together we spend our time going for long walks and holiday’s as often as we are able to. We also spend time on our canal boat enjoying the peace and tranquillity.

Living with both illnesses, I have been fortunate enough to have worked for the last 30 years switching between the beauty and photography industry. I have remained active over time, taking part in hobbies such as amateur dramatics, salsa dance and skiing.

I have always made sure to include exercise and a healthy diet within my lifestyle as I realise how important this is for my well-being. I meditate every evening and practise breathing exercises to help with anxiety and the everyday stresses life brings.

I am proud to say that I have raised approximately £8000 for the UKTS over the years through eventing. I hope that others will aim to do the same because not only are the funds much needed, the events help to raise awareness.

My goal as an ambassador is to share positivity and happiness to you all as best I can.

I am not saying life has always been a blast, however I have found my own unique ways of dealing with life’s challenges.

Please see my Instagram page for small hints and tips that may just help some of you…

‘beinghappyandthaly’

Tanya ❣️

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.

Anand has lived with thalassaemia major for the past 30+ years. Though it has been a challenge at times, it has spurred him to succeed in life, particularly through school, university and now in a professional career. Anand has had the experience of being treated at a regional hospital with limited expertise in thalassaemia. He has been fortunate to have a great support network around him in life, and this has encouraged Anand to help others with thalassaemia and to make a difference in the community. As a life member of UKTS, Anand has seen the great work the society has done. Career wise, Anand works in the City of London in brand, marketing and communications (BMC) for one of the Big-4 accountancy firms. In the past, Anand has worked for a number of global accountancy and law firms in BMC. He has also been an active member of the Sikh community in Berkshire.

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.

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.

Living with a chronic condition is challenging especially with rigid treatment regime one must follow just to remain healthy, regular blood transfusions, daily chelation medication etc. I must admit that I haven’t always been 100% compliant with my treatment and I tend to do things I shouldn’t, but I have always been honest with the Haematology team when asked, which is important.

I have been fortunate as well as the company I work for is very supportive when it comes to having time off for medical reasons or when I am feeling low, pre-transfusion. I am very grateful for my many friends at work especially I try to live each day to its fullest, to enjoy the times and days as much as I can.

I enjoy eating things I shouldn’t, travelling to new places, reading books and try not to take life too seriously. I am trying to keep up with my reading challenge this year. I always set myself a target of 50 books a year.

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.

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.

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.

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

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.

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.

Zoe Panaretou joined the UKTS team in July 2020.

She has recently graduated and obtained her degree in Nutrition and Food Consumer Science from the University of Reading. She is now a registered Associate Nutritionist (ANutr) which is accredited by the Association of Nutrition.

Zoe is passionate about health and fitness and will be helping patients to make small adjustments to their lifestyle to improve their quality of life. In her spare time, she volunteers at another charity, specialising in eating disorders.

As part of her role as information officer, she will be helping the team to provide nutrition advice that is specific to the individual’s needs and assisting raising awareness of Thalassaemia.

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