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After our patient engagement committee kick-off meeting in London last week, 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, one of two parts about our patient engagement committee, meet Laurence Woollard, Sally Hatton, and Wendy Adams.

Hi Laurence, Sally and Wendy. Why do you want to be part of the patient engagement committee?

Laurence: I’m a really big admirer of Findacure’s ethos and extensive programme of capacity building activities and resources that encourage and support rare disease groups to become more effective and sustainable. With personal experience of a rare condition and having worked on a number of projects with patient engagement at their core, I was really keen to be part of this newly re-named advisory committee to enhance Findacure’s outreach and trainings. Being on the cusp of turning 30, I particularly want to support Findacure in engaging with younger professionals of their member organisations, to help inspire the next generation of advocacy leaders in their respective rare disease communities.

Sally: I know from my own lived experience the impact that finding a patient support organisation and community can have in the lives of a patient and their loved ones, not to mention their value in shaping research and treatments. For me, Findacure are unique in the services they offer in ensuring that these organisations can continue to form and develop so I wanted to use my insight as a patient and a professional to help this work in any way that I could, and meet more likeminded people.

Wendy: If I can help Findacure to change the world’s understanding of rare diseases and continue to make great strides towards their vision where all rare diseases have treatments through their drive for research, I would love to do so.  Ultimately, many of the issues facing each rare disease patient organisation are not rare.

What do you like to do in your spare time?

Laurence: I mostly like to combine my interest in history with travelling/backpacking and take every opportunity to experience somewhere new, whether at home or abroad. I’ve already booked some cheap flights to Jordan and Israel this summer, so can’t wait to indulge in some ancient ruins and Middle Eastern cuisine! I’m also a keen swimmer (highly recommended for people with my condition) and I recently discovered pilates, which I absolutely love and is really improving my mobility like never before.

Sally: My friends will tell you I love to keep busy! I’m part of an amateur dramatic society which puts on two productions a year, I’m learning German, and when I get the chance I really enjoy travelling and city breaks in particular. When I do get to relax it’s usually by reading, or doing pilates which also helps me manage my symptoms.

Wendy: Spare time?!  When we have a few days off, we head straight to the mountains!  We love taking the kids outdoors and introducing them to the adventurous activities we enjoy.

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

Laurence: Hands down the Rocky Balboa chronology (except Rocky V… this was a flop!). I’m longing for a trip to Philadelphia just so I can climb the 72-stone steps before the entrance of the art museum and shout, ‘Adriaaaaaan!’

Sally: I’m a big pop-culture nerd so anything superheroes, sci-fi, or fantasy usually gets a thumbs up from me – Although I’ve never seen a single episode of Game of Thrones! 

Wendy: I think Octonauts has to be a firm favourite, closely followed by Sarah and Duck!

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

Meet our 2019 Patient Engagement Committee! (part I)

by Taryn Hubbard time to read: 3 min