Our Team

Liz

Brownnutt

Liz joined the BDFA in 2021, originally as Head of Fundraising and has 27 years’ experience in the charitable sector with a strong track record in successfully securing income from grant making bodies and managing fundraising teams. Since joining the BDFA, Liz has developed the fundraising function, diversifying our income streams to achieve long term sustainability. Liz was appointed Chief Executive Officer of the BDFA in 2024.

Liz is also a qualified Nursery Nurse and prior to her work in the charity sector, she worked on a busy hospital Neonatal Unit in Leeds, supporting families of pre-term babies.

As well as her professional skills and knowledge in charity finance, management and fundraising, Liz has personal experience of how Batten disease affects the family.

“My niece and nephew, Ellie Mae and Caleb both had CLN2 Batten disease and sadly passed away aged 6 and 9. They inspire me every single day in my role at the BDFA and my desire to see the charity go from strength to strength for the precious families we support.”

Liz lives in Shipley West Yorkshire with her husband, Matthew and they have three grown-up children.  In her spare time she enjoys being part of a musical theatre choir and is a huge tennis fan!

Dr Joanna

Nightingale

Jo joined the BDFA in June 2022 with a wealth of experience in scientific research and has worked in the lab doing pre-clinical research as well as in education, dissecting complex scientific information.

“I am a scientist and an educator with over 18 years of research experience and 10 years of teaching.

“I have worked on a variety of diseases including cancer and taught in schools and colleges, mostly to students who have English as a second language. From this diverse background I have learnt how to explain complex scientific ideas in a format that is more accessible to everyone, and I routinely practice on my long-suffering husband! I have also worked in the lab carrying out pre-clinical research.

“I am now looking forward to helping families understand what Batten Disease is, how the diagnosis will impact their lives and help them get the support they need. I will also be using my scientific knowledge to create links to other groups and scientists in order to keep up to date with all of the information and research related to Batten Disease and communicate this in a way that allows our families to understand everything that being done to help them.

When I am not working you can find me trying to keep up with my 3 boys and when time permits I enjoy knitting, puzzles, running, horse riding and taking on physical challenges.

Lisa

Forsyth

I joined the BDFA in October 2017 helping 2 hours a week, my role quickly progressed and I now work 5 days a week running the BDFA office. I love my role as no two days are the same, from office duties, sending out merchandise, running the social media and website, organising the conference, supporting the Chief Executive, Family Support team, and all other areas of the organisation, I will get stuck into anything.

My working background is in media, where I gained my HND in media production with business, then went on to work in TV directing sign language programmes.

After that, I worked in various administration roles with in travel, private health care and virtual admin. I have always wanted to work for a charity, so when the opportunity came up, I wanted to get involved.

I live with my twin boys who are at senior school and our 4 cats. I love paddle boarding, coffee, musicals and anything DIY and home makeover!

Working hours are Mon- Fri- 9-2.30pm

Arienne

Bassett

Arienne joined the BDFA in 2025, bringing over two decades of experience in financial management and bookkeeping across a wide range of industries including theatre, advertising, design, and film. Her career has spanned both commercial and charitable organisations, and she thrives on creating financial clarity and systems that support teams to focus on the bigger picture.

Alongside her finance work, Arienne is also a Cognitive Behavioural Hypnotherapist, working with individuals navigating stress, anxiety and burnout. With a background in wellbeing, Arienne brings a calm, considered approach to finance—helping teams feel supported, not stressed, when it comes to the numbers.

"Working with the BDFA means I get to combine both sides of what I do: supporting people and building solid foundations. I feel very proud to be part of a charity that truly makes a difference, every single day."

Arienne is endlessly curious and always learning—whether through professional development or the ever-growing stack of books by her bedside. Outside of work, she enjoys lifting weights, running, and recharging with a strong coffee. She and her husband love taking their rescue greyhound for long walks together across the South Downs.

Hannah

Whitley

I joined the BDFA in February 2026 and look after community fundraising while also supporting our trust fundraising work. I’ve worked in the charity sector for almost four years and recently completed the Certificate in Fundraising from the Chartered Institute of Fundraising to deepen my knowledge of fundraising planning and management.

I absolutely love fundraising. It is a great privilege to learn about the incredible work charities do, understand the impact of their services, and meet the people whose lives they change. Seeing that impact gives real meaning to my role and motivates me every day to help raise the vital funds needed for the BDFA to continue delivering its life‑changing support.

Outside of work, I am a keen runner – I’m usually training for some race whether it’s a 10k or a marathon! I also love weightlifting, reading, listening to music (I’m a huge Swiftie!) and spending time with my partner and our dog.

Mimi

Petty

Mimi’s son Bertie passed away in 2019 from CLN1 Batten disease when he was nearly 5 years old. She is already well known to families as the founder and volunteer facilitator of Bertie’s Helpers.

Mimi has over a decade’s experience of working with sick children and their families as a Health Play Specialist with the NHS, including at Great Ormond Street Hospital. Mimi believes the Peer Befriending Project provides much-needed support for families and that the wealth of knowledge families gather on their Batten journey is invaluable to pass onto others at the start of theirs, or at a point of change.

Mimi has been working in collaboration with the BDFA since December 2020, delivering Bertie’s Helpers which was set up in memory of her son. Whilst Bertie was unwell, she found good quality ready-meals were a lifesaver, when cooking became impossible during evenings dominated by preparing medications and dealing with seizures. Bertie’s Helpers provides a Tesco food delivery of ready-meals and treats for families going through an extra challenging time, such as a new diagnosis, disease progression, a hospital stay, moving house or end of life situations. It is hoped that not having to shop for food or prepare meals will give families more precious time together and bring a little bit of joy at a tough time.

Mimi said up of the BDFA Peer Befriending service…

“Helping set up the Peer Befriending service has been one of my proudest achievements. It has been wonderful to see parents supporting one another in a way that only other parents of children with Batten disease will be able to do. We have found that it not only benefits the parents using the service but also the Peer Befrienders themselves, who gain support from one another through the BDFA Peer Befriending Training Course, through attending regular Group Supervision and also a special weekend away together held in January 2023. This is a service which I wish had been available when Bertie was diagnosed. I would have found talking to another parent of a child with Batten disease on a regular basis and in a structured way, really invaluable.”

Mimi is married to Andrew, co-founder of Bertie’s Helpers and as well as Bertie, they are parents to Stuie and Henry.

My working hours are Tuesdays 9:15-3:45, Wednesdays 9:25-3:15 and Thursdays 9:25-3:15

Sarah

Kenrick

Sarah is a Registered Nurse for people with Learning disabilities and has worked in the health and social care sector for over 40 years, 20 of which were as Registered Manager for SeeAbility’s Heather House in Hampshire providing specialist long term residential support for young people and adults with complex disabilities, rare diseases and, in particular, CLN3 Batten Disease.

Following a move to Scotland, Sarah continued to work with SeeAbility in the role of Family Liaison for CLN3. Over the years Sarah has been able to present papers at a variety of national and international conferences, with subjects from the rights of children with disabilities, through to understanding and supporting behaviours for people with CLN3. Sarah has previously supported the BDFA as a trustee until 2015, and since April 2021 in a voluntary advisory role.

‘I am so blessed and humbled to be given such valuable knowledge and skills around CLN3, I have developed this knowledge thanks to all the amazing adults and young people with CLN3 and their families who I have cared for, supported and learned from in the past 30 years. You have helped me to develop, not only as a Nurse, but also as a person.

Batten is complex and at times hard to understand, but the children and people I have worked with have been infectious in their joy and desire to embrace life. I cherish the gifts they have given to me.’

Sarah lives in Aberdeenshire with her partner and rescue dog Taz. In her spare time Sarah enjoys baking, gardening and bird watching.

Main Working Hours: Monday- Thursday 9- 4.30pm