We are pleased to confirm the itinerary for the Climb Annual Conference on 14th October 2017 at the Macdonald Burlington Hotel in Birmingham.
It’s going to be an informative day with plenty of opportunities to meet and get to know other families, hear from a range of speakers and help us to shape our services for the future. To book your place now, please click here.
Main Conference Itinerary
9.00 am Registration & Tea/Coffee
9.20 am Opening Statement (Nigel Eaton – Chairman of Climb)
9.25 am Introduction (Lindsay Weaver-Chief Executive of Climb)
9.40 am Newborn Screening (Professor Jim Bonham) – Developing the NBS programme & app’ update
10.25 am Parent Speaker (Pete Hayes) – A family’s experience of a positive screening result for MCADD
10.40 am Genomes London (Dr Richard Scott) – The Genomes project, its aims and the opportunities for participants and researchers and our plans after the 100,000 Genomes Project.
11.00 am Tea/Coffee Break
11.20 am Access to Medicines (Josie Godfrey) – Overview on Access to Medicines: the process of access; Paul Connor – The Industry experience; Lindsay Weaver – The patient experience
12.00 pm Q&A Session
12.15 pm Laughing Man
12.45 pm Lunch
2.15 pm Laughing Man
2.30 pm Climb’s strategy, products, services and consultations (Lindsay Weaver)
2.40 pm Family Support (Rachel Evans, Climb and Family Speakers – Alex Aebischer, Rosemarie Khan & Harriet MacLeod) – Climb-connecting with our families
3.10 pm Tea/Coffee Break
3.20 pm Finance Talk (Paul Bussell, Climb) – Accessing financial help during difficult times
3.30 pm Fundraising (Parent Speaker – Pauline Bolton) – Our charity journey for Joshua
3.45 pm Fundraising (Parent Speaker – Tanya Brindle) – Life and fundraising around CAH
4.00 pm My Metabolic Hero (Joanne Taylor, Climb) – The Winner and the future!
4.20 pm Lotto Draw
4.30 pm Closing Statement (Lindsay Weaver)
Morning Breakout Session for Teens and Young Adults
9.20 am Patient Speaker (Thomas Wadsworth, CAH) – My experience of transition & explaining the need for a young person programme
9.40 am Transition & Transition with Disabilities (Briony McNelly, Salford) – Salford Royal NHS; the model of transition
10.00 am Patient Speaker (Rhiannon Dempsey, MCADD) – When life shuts a door…open it again. It’s a door. That’s how they work’; Growing up with a metabolic disorder
10.20 am Workshop – Shaping Services for Young People
11.00 am Tea/Coffee Break
11.20 am Workshop (continued)
12.00 pm Q&A
12.10 pm Close. Join main session for Laughing Man
Afternoon Breakout Session: Hypophosphatasia (HPP)
Hosted by Meryl Chambers of Soft Bones UK
1.45 pm Professor Richard Eastell (Management of HPP in adults) in which he will discuss
about how HPP is diagnosed in clinic and research, which will include a discussion about
pain management, Strensiq, and clinic visits.
2.10 pm Dr Vrinda Saraff (Paediatric HPP)
2.30 pm Dr Sarah McKaig (HPP and teeth)
2.50 pm Melanie Williams (The RUDY Study and why people should join)
3.00 pm Claire Sweeney- Paediatric Physiotherapist (Therapy/AHP role for children with
3.20 pm Lindsay Weaver (An update on access to Strensiq)
3.30 pm Deborah Fowler President of Soft Bones US: Advocacy and why it is important.
Awareness and how it’s much more than just getting diagnosed. UK & NICE
and the ability to impact access around the world
4.00 pm Tea/Coffee Break
4.15 pm Return to Horton suite for closing remarks
Afternoon Breakout Session: Urea Cycle Disorders (UCD)
2.30 pm – 4.20 pm
Dr Julien Baruteau (GOSH) – Developing Gene Therapy for Children with Ornithine Transcarbamylase Deficiency
BreathDX Workshop – The Ammonia Breath Monitor (AmBeR) project
The AmBeR project team will provide an update on the BreathDX technology for monitoring ammonia levels, which will soon be tested in both hospital and home settings.
There will be a chance for you to have a close look at the technology, and you will be invited to advise on some of the aspects of home testing, to help us make this process as straightforward as possible for the families who participate.
You will also be asked to advise the AmBeR team about the kind of detailed information they should collect from families alongside home testing activities, to gain an all-round picture of what life is like for families living with UCDs and assess the potential value of the new technology.