General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Rebecca Bower- Clinical Nurse Specialist

Rebecca Bower- Clinical Nurse Specialist

  I just wanted to take the time to quickly introduce myself to you all. As you are aware, Laura Lee will be starting maternity leave in May and I…

Read More
Wendy Thompson- Family Support Officer (North)

Wendy Thompson- Family Support Officer (North)

I originally qualified as a Nursery Nurse, working with families and young children with disabilities within local Health Authorities, working alongside multi-disciplinary teams (i.e. consultants, physios, specialist nurses etc.) Since…

Read More
Borris – Official Mascot

Borris – Official Mascot

Hi!  I am Boris The Bear, I am the official mascot for the BDFA. I live in the BDFA office and make sure everything is running smoothly. I love going…

Read More
Amanda Mortensen –  Chief Executive

Amanda Mortensen – Chief Executive

Amanda has been working in the voluntary sector for 15 years, setting up community groups and then going on to chair the local Parent Carer council in Brighton & Hove.…

Read More
Lisa Forsyth- Office Staff

Lisa Forsyth- Office Staff

  I joined the BDFA in October 2017 helping in the office, I now work 2 days a week here helping wherever needed with office duties and supporting the Chief…

Read More
Cathy McSweeney- Family Support Officer (South)

Cathy McSweeney- Family Support Officer (South)

  Cathy McSweeney is the Family Support Officer for the South. I have worked mostly in educational and respite establishments with children with a variety of disabilities, including those with…

Read More
Laura Lee – Clinical Nurse Specialist

Laura Lee – Clinical Nurse Specialist

  I started the role of Clinical Nurse Specialist for Batten disease in October 2016. I am a qualified paediatric nurse with experience in general paediatrics, neurology, metabolics and research.…

Read More

The BDFA is governed by a committed board of Trustees who bring a range of individual skills to help the BDFA achieve its aims.

Richard Whitbread – Treasurer

Richard Whitbread – Treasurer

    Richard spent over 25 years as a Senior Financial Manager in the Consumer Goods industry retiring in 2014.  His main duties were monthly and annual financial reporting and…

Read More
Catherine Sermon – Trustee

Catherine Sermon – Trustee

Catherine is a Campaign Director at a charity called Business in the Community, where she has worked for over 15 years.  Over this time she has worked with a wide…

Read More
Pauline Docherty – Chair

Pauline Docherty – Chair

Pauline is one of the founder members of the BDFA and is married to Jim.  Both her children were diagnosed with CLN3. Joanna passed away in 2008 (age 23) and…

Read More
Neil Dunford – Trustee

Neil Dunford – Trustee

Neil Dunford recently joined as a Trustee member for the BDFA this summer. His daughter, Yanna, has the CLN2 variant of Batten Disease. Yanna has been enrolled on the BioMarin Clinical…

Read More

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

 

All donations help us to provide the best support we can to families affected by Batten Disease.

 

Thank you for your support.