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This week’s blog was written by a member of our 2021-2023 Patient Group Engagement Committee! Get to know Francesca Wicks now and keep an eye out for more ‘Meet the Team’ blogs from our new committee members.

Get to know Francesca Wicks

Why/how did you become involved in rare diseases?

In 2016, I joined the IMAGINE ID research project as their study coordinator. The study was examining the long-term mental health outcomes for individuals with intellectual disability who had a diagnosed genetic cause. This diagnosis was often very rare and sometimes completely unique to that individual. After helping coordinate and recruit 3,500 individuals from across the world into the study, I then joined Unique in 2019. Unique is a charity helping families, professionals and the public understand rare chromosome and gene disorders. Throughout my professional life, I have been involved in healthcare and empowering people with information so that they are able to make informed choices about what is best for them, their children and their families. This is what brought me to studying for an MSc in Genetic and Genomic Counselling. During my training and the height of the Covid-19 pandemic, I was also diagnosed with my own rare disease after a rare tumour, a ‘solitary fibrous tumour’ categorised under the sarcoma cancer team, was found in my abdominal wall. This personal experience has highlighted to me the importance of information sharing, patient support groups and raising the profile of rare diseases with a range of healthcare professionals.

Why did you choose to join our Patient Group Engagement Committee?

I chose to join the Findacure Patient Group Engagement Committee as I am keen to ensure the voices of those individuals and families affected by rare diseases are heard, particularly those that I am encountering in my day-to-day work as an Information and Family Support Officer for Unique across the globe. My varied professional experience with rare diseases in a research, clinical and charitable context brings a different perspective to challenges within the rare disease field. I hope to be able to provide some insight into how these different challenges can be solved or mitigated. As well as my recent personal experience of having a rare disease diagnosed later in life during a global pandemic, and how services have been impacted during this time. Joining the committee was also an exciting opportunity to be involved with more of Findacure’s growing work streams, and meet and learn from passionate and motivated people involved in a variety of rare diseases.

What do you enjoy doing in your spare time?

In my spare time, I really enjoy sports- Football, American Football, Cricket, Formula 1, Netball, Tennis…if sport is on or available, you can guarantee it is on in some capacity in our house!

If I’m not watching live sports, I am often watching sports documentaries- which is how I have gotten into a few more sports recently. This includes Basketball (The Last Dance) and Formula 1 (Drive to Survive) both on Netflix really engaged me into the sports and I have been watching the recent Grand Prix’s knowing what is happening!! Having played netball until recently I am an avid follower of the England Roses national netball team and hope they can finally compete in future Olympics.

Favourite book/movie/tv show? And why?

One of my favourite TV shows, which I was so pleased to find during recovery from surgery in 2020, was Schitt’s Creek. I absolutely love the characters and how inclusive the show is of all different walks of life. As well as having some incredible quotes to hand, such as this weather-related question to an ex-Soap actress ‘What’s your favourite Season?’ – ‘Awards’.

In addition to the equally outrageous and heart-warming storylines, the fashion and costumes were fantastic! I had to be careful at times to make sure I didn’t split any stitches from laughing, particularly at Moira’s extravagant collection of wigs and her respective spreadsheet to categorise and give them all names. It is a show that made me laugh and cry in equal measure and I can’t wait to re-watch it again!

Keep an eye out for more blogs that’ll introduce you to the members of our 2021-2023 Patient Group Engagement Committee!

Meet our Patient Group Engagement Committee member: Francesca!

by Guest Contributer time to read: 4 min
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