General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
JO Nightingale White Coat

The BDFA is very pleased to announce that Dr Joanna Nightingale, our part-time Scientific Officer, will take up a new expanded role from April.

Joanna will take up the role of Head of Scientific Affairs, a full-time post which will see Jo take responsibility for all aspects of scientific affairs at the BDFA.

The new expanded role is possible due to the generous support of a family in the Batten community. Joe and Pheobe Swaffield have raised £75,000 which will fund this role over two years, paying full salary and employer costs for the first year and 50 per cent of all costs in the second year. Joe and Pheobe’s daughter Florence, 4, has CLN2 Batten disease.

Dr Joanna Nightingale has an undergraduate degree in biochemistry and a PhD in molecular cell biology. She has worked in research labs for most of her career with a stint of teaching when her children were younger. Her experience includes developing new cancer cell lines, designing research studies and reporting the results to pharmaceutical companies, editing grant applications, maintaining health and safety documents, teaching medical students and presenting data to diverse audiences.

Joanna will look at developing new opportunities in the Batten disease landscape in the UK, liaising with treatment centres around the UK, overseeing any grant applications managed by the BDFA, the development of clinical trials and liaising with pharmaceutical companies globally.

“We are incredibly grateful to the Flory’s Story community who have enabled this to happen through their very generous donations, and we are equally as proud that through Flory’s Story, we are able to make a difference in this way,” say Pheobe and Joe. “This role is going to be key for the upcoming clinical trials, as well as ensuring we are well positioned for the NICE 2024 review of Brineura Enzyme Replacement Therapy. We feel relieved and proud to have Jo working full time for the BDFA on the Batten Disease scientific landscape, and we are excited to see what the role brings to the table over the next 18 months.”

“The addition of the full-time Head of Scientific Affairs role is a significant moment for the BDFA,” adds Zlatko Sisic, Chair of Trustees. “With the expansion of Jo’s role we are looking to develop our research capabilities and strengthen our collaboration with scientists and industry to advance drug development and care for patients with NCL disorders.”

One of the most important aspects of Jo’s role will remain being a point of contact for families with queries around the science of Batten disease, research and clinical trials.

Jo can be contacted at

Make a donation:

To make a donation please click the button to the right.  This link will then take you to a PayPal page where a donation direct to us can be made.

The amount you enter is your choice and PayPal can collect the funds from a debit or credit card account.

Thank you for your donation.