After our patient engagement committee kick-off meeting in London earlier this month, we would like to introduce you all to our newly-appointed committee whose expertise will enable us to shape the work we do in the rare disease community! Every single one of our committee members is passionate about raising awareness for rare diseases, and many have a personal connection to the cause. We are incredibly optimistic about what we will be able to do as a collective, having already been given many insights and ideas at the kick-off meeting which we are channeling into our work.

In this week’s blog, the second of two parts about our patient engagement committee, meet Alan Thomas, Ola Fagobohun, Sandra Webb, and Sue Routledge.

Hi Alan, Ola, Sandra and Sue. Why do you want to be part of the patient engagement committee?

Alan: I want to input the patient/”end user” voice to the Findacure family, as well as challenging and discussing ideas that will enhance and truly benefit the rare disease community.

Ola: Health and wellbeing has always been a passion of mind, well before the ‘wellness revolution’ got going. I got a postgraduate diploma in nutrition and dietetics which I used to support people living with chronic health condition make healthy changes. I’ve always been interested in human behaviour, and as a consumer psychologist have supported organisations big and small to better understand how to use language and communication to help consumers make healthy behaviour change, I particularly enjoyed working with Central Government and Public Health England on healthy eating and physical activity promotion projects.

Sandra: I want to utilise and share all of my experience gained over 20 years. I am currently working for patientprimary as Director of Patient Services where I have been developing the service in collaboration with patients, families, caregivers, advocacy groups and charitable organisations. We have many rare disease studies that we support on a global level. The most important and rewarding part of this job is working with patents, families, caregivers and their support networks to develop a service based on their experiences. My aim is to share my knowledge to help support those who are involved in any element of the clinical trial experience, and to ensure they have the tools for whatever area of the trial they are involved in. Empowering and achieving personal goals as well as applying feedback from experiences to ensure we provide a framework for a service that meets everyone’s needs.

Sue: Findacure has helped Pitt Hopkins UK and me so much over the last few years that I would like to help in some way too.

What do you like to do in your spare time?

Alan: “Spare time”? What’s that? I like to travel and at home I like to go out on my tricycles; adult upright tricycle in the winter and recumbent tricycle for the summer.

Ola: I love sport though do more following than playing at the moment – nervous and blindly loyal Liverpool football fan, big fan of women’s football too, and regular attend athletic events. I enjoy walking in parks, do the park run, and take monthly walks in and around the Peak District with a women’s wellbeing walking group. Learning new things, this month I’ll be taking beginner’s drawing classes. Travelling in and around the UK and abroad, mainly by train, learning about local cultures and languages. Volunteering as a Princes Trust adviser and health champion and coach. I also try and get to the cinema or theatre one a month.

Sandra: In my free time I like to practice yoga, run and swim. I love to travel and immerse myself in different cultures as well as experience the food. Food, cooking and eating are a passion. I am a alternative therapist and like to practise when time allows

Sue: In my spare time I like to play badminton and meet up with friends.

What’s your favourite book/TV show/movie?

Alan: TV show= medical dramas (spoiler alert BBC Casualty is made in Cardiff, can mingle with the cast quite often when visiting Cardiff!)

Ola: Book – Year of Yes by Shonda Rhimes; TV show – Big fan of crime drama, my UK favourite is Line of Duty (love the twists and turns) and US comedy is Curb your enthusiasm (The detailed observations on daily life fascinate the researcher in me)

Sandra: I try to read everyday and always have a variety of books on the go at the same time. I particularly enjoy psychological thrillers and will balance this with books on alternative therapies and lifestyles, I am currently reading Ikigai, the Japanese secret to a long and healthy life. I have an eclectic taste in movies, music and TV.

Sue: My favourite TV show is Casualty/ Holby City.

Thanks so much guys, we’re so excited for you to be a part of Findacure!