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Confernce Post

We are pleased to invite you to the 2016 BDFA Family Conference which will be held on:

Friday 18th – Sunday 20th November 2016 from 9.30am – 4.00pm

at the Holiday Inn Bridgefoot Quay, Warwick Road, Stratford-upon-Avon CV37 6YR

There will be the opportunity to attend talks and workshops and to meet with other families and professionals as well as BDFA staff and advisors. Lunch and refreshments will be provided on both days and there will be an evening meal and social event on the Saturday evening. There will also be a welcome drinks event with a pay bar on the Friday evening at the hotel.

  • Care and symptom managements sessions with experienced clinicians on all forms of the NCLs
  • Sessions on diet and nutrition including the ketogenic and blended diets
  • A bereavement programme led by experienced counsellors from the Maypole project
  • Latest research updates and clinical trials including leading UK scientists and representatives from pharmaceutical companies.
  • Sessions on how we can support children and young people in education with our colleagues from SENSE
  • Music therapy sessions led by our partners at the Amber Trust
  • Advance care planning and palliative care support from Together for Short Lives
  • Full programme of activities for affected children and siblings including theatre workshop, animal encounters, canal boat trip and butterfly farm with full nursing and 1 to 1 carer support.
  • And importantly the opportunity to meet with old friends and make new ones.

Conference Programme

Activities for children will run throughout the weekend with activities at the hotel on Saturday and a trips out on the Sunday. These will support affected children and their siblings giving them all the chance to get involved in fun activities. Support will be provided by fully qualified nursing and care staff from Nurses Plus throughout the weekend, as well as by other volunteers.

We have secured generous sponsorship for this event enabling a limited number of families to attend the conference (including hotel accommodation) free of charge. We therefore hope as many families as possible will attend.

If you would like to attend, please complete and return the enclosed Registration Form with a deposit cheque (see enclosed Terms & Conditions). If you will be bringing children please also contact Lucy Roose directly -( admin@bdfa-uk.org.uk or by phone on 01252 416323) for the relevant paperwork. If children will be attending, please let us know as soon as possible so that we can discuss your child’s needs in planning for the trips, even if your requirements change closer to the date.

Family Booking Form

Family Conference Info 

Professionals Booking Form

Professionals Conference Info

Make a donation:

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

You can also TEXT DONATE 

Text the words BDFA15 £2 / £5 / £10 to 70070

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

Thank you for your support.