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A message from Laura Lee our amazing Clinical Nurse Specialist


I wanted to share with you all the exciting news that I am expecting a baby boy in June and will be going on Maternity leave on the 15th May. I am delighted to be able to tell you all that my colleague, Rebecca Bower, will be covering the post whilst I am away. Many of you have already met Becky, either at GOSH, over the phone or on one of our recent Zoom sessions. She will no doubt have the opportunity to introduce herself properly but I do want to mention that Becky and I have worked closely together for the last couple of years and I could not wish for a more caring and dedicated colleague to leave you with. She currently holds a similar Clinical Nurse Specialist role, working with children with a variety of lysosomal storage disorders, such as the Mucopolysaccharidoses. Becky has worked alongside me supporting the CLN2 Brineura infusions at GOSH and we have had the opportunity for a detailed handover.

Whilst I have the chance I am going to blab on a bit. When I started this role I had experience working with a small number of children with an NCL diagnosis but this quickly expanded and I’ve since had the privilege of meeting so many wonderful children, young people and families. Over the last three and a half years you and your children have taught me an unbelievable amount, not just about Batten disease but about resilience and community.
In such a short space of time I have had incredible opportunities to learn from professionals who have worked with the NCLs for years or decades. In turn, I have been able to share knowledge and experience with local clinical teams, at conferences in the UK and even overseas. My primary goal has always been to provide support and advice for families across the UK when it’s needed and in whatever form it’s needed to make things just a little bit easier for you. I hope you have found value in the Batten Clinical Nurse Specialist role. From those I’ve spoken to at family days and conferences, those I speak with frequently or infrequently on the phone or via e-mail to those we see at GOSH, thank you for allowing me to be a part of your journey and I look forward to seeing you again next year!
(Batten disease CNS)


Thankyou so much to Laura and Welcome to Becky. We Wish Laura all the best for her new arrival due in June!

The BDFA Team

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