Annual Conference

  Wyboston Lakes


  Sat 10 and Sun 11 October

  Click here






AGSD-UK Annual Conference 2015


Please contact the AGSD-UK Office if you need to attend or book accommodation

Wyboston Lakes Training Centre
Great North Road, Wyboston, Bedfordshire, MK44 3AL 

(Hotel Website)


Weekend of October  10th and 11th 2015

Provisional Programme:

Saturday Sunday

Noon: Registration and buffet lunch 

GSD Type-specific workshops 

Conference dinner

AGSD-UK Annual General Meeting

AGSD-UK Development update 

GSD Type-specific workshops







Provisional: workshop programmes will available for download closer to the event:


  • Make a Smoothie workshop
    • Smoothies for the dietary needs of all GSDs
  • Art Exhibition
    • International submissions to Genzyme's "Expression of Hope" art project will be shown, including the UK entry by Poppy Murduck
  • Hepatic Workshop, including:
    • Medical Experts Q&A - Chaired by Dr Uma Ramaswami
    • Dr David Weinstein, University of Florida, Update from the GSD Programme
    • Dr Monica Dambska, Personal Experience of GSD I as a patient and as a physician *New
    • Dr Helen Mundy, keytone Monitoring
    • Dr. Ulrike Steuerwald, Hannover: 20 years experience of working with Faroese GSD III families:
      •  The basics of GSD III, VI and IX 

      •  Nutrition and treatment in GSD III, VI and IX

      •  Metabolic control of GSD III

      •  Exercise for GSD III

      •  Emergency Plans for GSD III

    • Dr Nicolai Preisler, Copenhagen: Improving exercise tolerance in metabolic myopathies
    • Diane Greene, Dietitian at Salford Royal, Dietary workshop
  • Late-Onset Pompe Workshop, including:
    • Medical Experts Q&A chaired by Dr. Mark Roberts, Royal Salford Hospital
    • Ben Parker, Being your own Advocate
    • Ventillation workshop, Dr Mark Roberts
    • Diane Greene, Dietary workshop (including the FODMAP diet for IBS symptoms)
    • Ed Silk and Kevin Annesley: Exercise Workshop & Hydrotherapy Benefits
    • Clinical trial updates
    • Pompe Support Team: Pompe literature review, 10 years of Myozyme
    • Mike Nichols: Educating GPS and other health professionals
    • Newborn Screening update
    • Travelling abroad - facilitated workshop
  • McArdle Workshop, Topics will include:
    • Triheptanoin trial
      • Report on the three-centre trial by Dr Karen Madsen, Copenhagen Neuromuscular Centre.
    • Sodium Valproate trial
      • Report on the two-centre trial by Dr Renata Scalco, Institute of Neurology, UCL.
    • Ketogenic diet
      • Analysis from Stacey Reason of the "Ketosis in McArdle Disease" survey.
      • Report of the workshop in New York and progress around the world.
      • Discussion on the diet and ways forward for studies. 
    • Courses and events
      • Update on the 5th annual walking course and the first ever "Children and Parents" event.
      • Plus a discussion on the needs to be met and possible plans for the future. 
    • Developments at the McArdle Clinic
      • Dr Ros Quinlivan on new patient information days and on clinics for children.
    • Expert panel
      • Dr Ros Quinlivan (neuromuscular consultant)
      • Charlotte Ellerton (dietitian)
      • Dr Jatin Pattni (neuropsychologist) 
      • Our expert panel will answer your questions on any aspect of McArdle's.


  • Gala Dinner on Saturday evening


Registration and bookings:


Please contact the AGSD-UK Office if you need to attend or book accommodation


You must register in advance.

Conference registration and accommodation should be booked using the forms below or through the AGSD-UK. 

Online Registration Forms:


For further guidance please contact the office on 0300 123 2790 or email


Directions and travel


Using the Site Map you should aim for the Reception Desk at the Training Centre (Building C). 

All overnight accommodation will be in Building A

The conference rooms are all housed in the Oakley Suite (Building Z).

The dinner on Saturday evening will be held overlooking the lake in the Fountains Restaurant (Building M).