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We are pleased to announce an exciting new annual BDFA initiative,

the Pride of Batten Awards

This is your opportunity to highlight the very best practice across the UK. Who is going the extra mile for your family member with Batten disease? Who would you like to celebrate for their hard work, innovation or kindness? We want to hear about those individuals who have really made a difference whether they be a school transport escort, teaching assistant, social worker, carer, consultant, nurse, therapist or with any other role in your child, young person or adult’s life.

There are four categories: Health, Education, Social Care and Other.

It’s the first year of these very special BDFA awards, celebrating best practice across the UK among people supporting and working with our children, young people and adults with Batten Disease.All our winners and those specially commended have been nominated by families, for ‘going the extra mile’, their kindness and their support and insight. It was very difficult to pick out winners and commendations and every single person nominated is incredible and hugely appreciated. It was so special to see all the faces (on Zoom, of course!) of those making a difference to our community alongside families and children and young people with Batten disease. Well done all!Thank you so much to all who took the time to nominate and to our judges for their assistance.  
Together we WILL make a difference
Here is the rundown of the nominations and incredible winners, 
Winner: Kath Black, 1:1 Teaching Assistant, Poynton, Stockport
(nominated by Lucy Carroll, mum to Amelia, who has CLN2)
“We will be forever grateful to Kath for how much love she has shown our little girl. We thank her for being such an important part of Amelia’s journey.”
Special Commendation: Lynette Iemboli, Teaching Assistant, Gloucester
(nominated by Ali Glover, mum to Joshua, who has CLN6)
“From the first day of Joshua’s diagnosis Lynette has been absolutely amazing and a complete life-line to our whole family not just Joshua. She really is the most incredible person and is thoroughly deserving of recognition which she very seldom gets.”
Other nominees in this category:
  • Chloe McCole, Sarah O’Donnell, Paul and all the other staff at Cosy Cottage Nursery, Edinburgh;
  • Claire Middleton, Head Teacher Wickersley Northfield Primary School, Rotherham;
  • Emma Swift, Visual Impairment Teaching Assistant, Rotherham;
  • Chris Rollings, Head teacher, Hadrian School, Newcastle;
  • Melissa Taylor, Teaching Assistant, Sheffield;
  • Rachel Broderick, Teaching Assistant, Birmingham;
  • Rachel Elliot and Emma Thompson, Teaching Assistants, Peckover Primary School, Wisbech;
  • The Visual Impairment Team, Rotherham Metropolitan Borough Council
Winner: The Great North Children’s Hospital medical and nursing team, Newcastle
(nominated by Gail Rich, mum to Nicole and Jessica who both have CLN2).
“We cannot thank the team at Newcastle enough and we feel incredibly fortunate that our voices were valued and that they wanted to help us. They thoroughly deserve to be recognised because they made this happen and they supported us on achieving what has been our goal since the girls began treatment back in 2017.”
Winner: Anna Dene, Carer, Sheffield(nominated by Michelle Windle, mum to Olivia, who has CLN3)
“Anna is a great support to us all and has often been someone I can pour my heart out to as we go through this journey. Even though Olivia can no longer tell us, we know she loves spending time with Anna. You only have to see the smile on her face!”
Special Commendation: Sofia Khan, Social Worker, Sheffield(nominated by Chantelle Cammack, mum to Sheyne and Amber, who have CLN2)
“Sofia has become part of our extended family, with us through the good and bad times, providing the best support possible.”
Other nominees in this category:
  • Sabrina Kah, Family support worker at The Rainbow Trust, Sunderland

Special Commendation: Steve Box, Community Nurse, CAMHS, Hampshire

(nominated by Lisa Hover, mum to Annabelle and Robbie, who have CLN3)
“Steve is a family man himself and is very genuine with his concerns. He is just a great, kind, honest man.”
Other nominees in this category:
  • The nursing team at Manchester Children’s Hospital (Claire Hamilton Kay, Fiona Heap and Katrina);
  • The consultant and nursing team in Edinburgh (Dr Elizabeth Pilley, Michelle Small and Celia Brand);
  • Justyna Szmyd, Physiotherapist, Burton-on-Trent;
  • Laura Lee, Clinical Nurse Specialist, GOSH;
  • Professor Paul Gissen, Consultant in Paediatric metabolic diseases, GOSH;
  • Shani Bradwell, paediatric physiotherapist, Sheffield
Winner: Barbara Moore, Camsight Charity Worker, Wisbech
(nominated by Sarah Dodkin, mum to Finley and Harrison who have CLN3)
“Barbara has retired this month which is well deserved for her as she truly deserves to live life to the fullest but we and other families will miss her so very much. But I know that if we really needed her, Barbara would still pick up the phone, come round with a hug and point us back in the right direction because that’s who she is . An absolute diamond of a woman.”
Special Commendation: Alex Currie, Uncle, Edinburgh
(nominated by Sophie Currie, mum to Eilidh and Cameron, who have CLN1)
“We would not have been anything as organised at this stage without his help and I am really grateful for everything he has done for us and his niece and nephew.”
Other nominees in this category:
  • Tracy Paxton Beattie, Community Champion at Sainsburys, Throckley

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