PROGRAMME FOR THE ALLIED PROFESSIONALS' FORuM

Wednesday 29 November 2006

09.00 Welcome / Introduction

09.10 Quality of life from the patient's point of view: Evolution of 20 years of multidisciplinary care in the ALS speciality clinic. J Armstrong

09.30 Coping strategies in life with ALS/MND. J Moeller

09.50 Practical management strategies for dysphagia in MND/ALS. J Johnson

10.10 Complementary and alternative medicine in ALS/MND: Practical strategies to differentiate positive integrative medicine from fraudulent health claims. A Ellis

10.30 Discussing sexual wellbeing in the MND clinic using the EX PLISSIT Model. R Marsden

10.50 - 11.15 Refreshments

11.15 What is the caregiver's situation and how does it influence his/her relationship to the patient with amyotrophic lateral sclerosis? D Lule

11.35 Managing my loved one's body: Family caregivers' experiences of bodywork in ALS/MND. R Ray

11.55 Developing a spectrum of support for MND caregivers. A Richter

12.15 - 13.30 Lunch

13.30 Developing a care model for ALS patients with Expert Co-operation in Japan. F Tsubai

13.50 Sakura model: Advances in the personal assistant system for PALS in Tokyo. Y Kawaguchi

14.10 An econo-social survey of people with ALS/MND on permanent assisted ventilation in Tokyo, Japan. M Toyama

14.30 Developing an automatic suction system on TPPV. M Yamamoto

14.50 Development and clinical evaluation of an input device with eyeball movement. T Miyasaka

15.10 - 15-30 Refreshments

15.30 How do individuals with amyotrophic lateral sclerosis make decisions about assisted ventilation. J Lemoigan

15.50 Dilemmas associated in withdrawing tracheotomy ventilation at home. R Sloan

16.10 End of life decisions and psychological aspects in amyotrophic lateral sclerosis - empirical ethics and neuropsychological approaches. T Matuz

16.30 Preferred Place of Care (PPC) for people with MND. L Storey

16.50 Summing up 16.55 Close

 

 

 

 

 

 

 

PROGRAMME FOR THE 17TH INTERNATIONAL SYMPOSIUM ON ALS/MND

Thursday 30 November

SESSION 1 JOINT OPENING SESSION

08.30-08.45 Welcome and Introduction ? Professor Pam Shaw, HIH Prince Tomohito of Mikasa 08.45-09.15 Patient support in Japan - I Kimura (Japan) (09.15-09.30 Comfort break) 09.30-10.00 Guam ALS: epidemiological and genetic observations in relation to PDC and dementia D Galasko (USA)

 10.00-10.30 Overview of ALS variants in the Kii Peninsula of Japan S Kuzuhara (Japan)

SESSION 2A NEUROGENOMICS

11.00-11.30 Making the most of your microarray K Mirnics (USA)

 11.30-11.45 Gene expression profile of spinal motor neurons in sporadic ALS F Tanaka (Japan)

11.45-12.00 Gene expression profile of spinal motor neurons in the G93A SOD1 mouse model of ALS at different time points in the disease - L Ferraiuolo (UK)

12.00-12.15 Whole genome microarray analysis of motor neuron vulnerability in G93A-SOD1 and P301L-TAU transgenic mouse models LC Kudo (USA)

12.15 - 12.30 Molecular pathway analysis of Amyotrophic Lateral Sclerosis by genome-wide expression profiling of human blood LH van den Berg (Netherlands)

SESSION 2B DISEASE HETEROGENEITY

11.00-11.15 Monomelic motor neuron disease in Europe: progressive and non-progressive forms ? M Swash (UK)

11.15-11.30 The influence of rare ALS phenotypes on survival B Tomik (Poland)

11.30-11.45 ALS at the onset: topography of upper and lower motor neuron weakness J Ravits (USA)

11.45-12.00 MND/dementia is a unique nosological entity and not just an overlap between MND and frontotemporal dementia TH Bak (UK)

12.00-12.15 Motor findings predominate in frontotemporal dementia C Lomen-Hoerth (USA) 12.15-12.30 Behavioural changes in ALS patients with and without cognitive impairment S Woolley-Levine (USA)

 

SESSION 3A LESSONS FROM OTHER MOTOR NEURON DISORDERS

14.00-14.30 Response of microglia in a model of motor neuron pathology S Kohsaka (Japan) 14.30-15.00 Molecular-targeted therapeutics for Spinal Bulbar Muscular Atrophy (SBMA) G Sobue (Japan)

15.00-15.15 Loss of endogenous androgen receptor accelerates motor dysfunction and androgen insensitivity in a mouse model of SBMA ? PS Thomas Jr (USA)

15.15-15.30 Modulation of HSP90 function: a molecular targeted therapy for neurodegenerative disorders - MW Waza (Japan)

SESSION 3B CARER SUPPORT

14.00-14.45 Impact of long-term survival on carers: lessons from dementia care J Oyenbode (UK)

14.45-15.00 The impact of ambiguous loss and emotional labour on family carers RA Ray (Australia)

15.00-15.15 The impact of MND on the mental health of informal carers in the UK and their need for increased emotional support C Mockford (UK)

15.15-15.30 Intensive psychological rehabilitation in small family groups - J Rahbek (Denmark)

SESSION 4A CELL BIOLOGY & PATHOLOGY

16.00-16.30 Neurotoxic actions of secreted mutant Cu/Zn SOD ? J-P Julien (Canada) 16.30-16.45 Redox system up-regulation in ALS motor neurons: a survival mechanism under stress S Kato (Japan)

16.45-17.00 Superoxide Dismutase 1 from spinal cord of G93A rats binds to inner membrane of mitochondria and increases mitochondrial ROS production G Goldsteins (Finland)

17.00-17.15 Cell-permeable peptide antioxidants as a novel therapeutic approach in a mouse model of ALS S Petri (Germany)

17.15-17.30 Targeting oxidative stress as a potential therapy for ALS SC Barber (UK)

SESSION 4B IMPACT OF LONG-TERM SURVIVAL

16.00-16.45 Pathological aspects of long term survival in ALS patients on respirators H Takahashi (Japan)

16.45-17.30 Long-term communication strategies in ALS patients with TPPV H Hayashi (Japan)

 

Friday 1 December

SESSION 5 POSTER SESSION

Presenters will attend their posters, in allocated 30-minute slots, from 08.30-11.00

POSTER THEMES:

            Human cell biology and pathology

            Genetics & epidemiology

            In vivo experimental models

            In vitro experimental models

            Therapeutic strategies

            Diagnosis, prognosis and disease progression

            Respiratory & nutritional management

            Cognitive & psychological assessment and support

            Research to improve standards of care

            Scientific & clinical work in progress and care practice

SESSION 6A BINDING & AGGREGATION PROPERTIES OF Cu/Zn SOD

11.30-11.45 Identification of proteins that bind wild-type and/or familial ALS-linked mutant Cu/Zn SOD using phage display GD Ghadge (USA)

11.45-12.00 Intermolecular disulfide bonds-mediated aggregation of SOD1 in ALS H-X Deng (USA)

12.00-12.15 Structure-based design of SOD1 aggregation inhibitors: implications for development of a new class of ALS therapeutics S Ray (USA)

12.15-12.30 Ultra-high and atomic resolution structures of Cu/Zn SOD and its FALS mutants SV Antonyuk (UK)

SESSION 6B NUTRITIONAL ASSESSMENT & SUPPORT

11.30-11.50 Modelling energy expenditure in ALS: a prospective longitudinal study EJ Kasarskis (USA)

11.50-12.10 Validation of bioelectrical impedance spectroscopy for measuring lean body mass and total body water in ALS - R Tandan (USA)

12.10-12.30 Compliance as it relates to specific elements in the practice parameters for

 

             

PEG placement ? P O'Connor (USA)

SESSION 7A INTERPRETATION OF DATA FROM SOD1 MODELS

14.00-14.45 The SOD1 mouse as a model of sporadic ALS D Figlewicz (USA)

14.45-15.00 Design, power and interpretation of studies in the standard murine model of ALS S Scott (USA)

15.00-15.15 An array-based approach to identify biomarkers for ALS ? J De Zutter (USA) 15.15-15.30 Outcomes of the ENMC workshop on eGuidelines on Preclinical Studies in ALSf A Ludolph (Germany)

SESSION 7B PALLIATIVE AND END OF LIFE CARE

14.00-14.30 Palliative care beyond cancer J Addington-Hall (UK)

14.30-14.45 Factors determining euthanasia and physician-assisted suicide among patients with ALS in the Netherlands JH Veldink (Netherlands)

14.45-15.00 Follow up-survey of patients with ALS/MND interviewed about self-determination Y Narita (Japan)

15.00-15.15 People living with ALS tell the ediagnosis storyf: what happened before they knew SJ King (Australia)

15.15-15.30 Palliative care for people living with ALS/MND ? D Oliver (UK)

SESSION 7C SURROGATE MARKERS & OUTCOME MEASURES

14.00-14.15 Test-retest and inter-examiner reliability of automated motor unit number estimation (MUNE): comparison of multiple point stimulation and statistical method Y Naito (Japan)

14.15-14.30 Evidence for a whole brain atrophy in primary lateral sclerosis, related to grey matter atrophy as compared to white matter atrophy MC Tartaglia (Canada)

14.30-14.45 Volumetric proton spectroscopic imaging in ALS K Sharma (USA)

14.45-15.00 A comparison of cerebral hemodynamic parameters in patients with ALS and PLS accompanied by changes in cognitive impairment MJ Murphy (Canada)

15.00-15.15 The performance of clinical outcome measures in a phase II trial of glatiramer acetate in ALS PH Gordon (USA)

15.15-15.30 Identifying responders to increase power and sensitivity in ALS clinical trials DH Moore (USA)

SESSION 8A NEUROTROPHIC FACTORS

16.00-16.30 Neurotrophic factors as potential neuroprotective agents in ALS H Funakoshi (Japan)

 

             

16.30-16.45 Intrathecal delivery of hepatocyte growth factor at the onset of paralysis slows disease progression in a rat model of ALS ? M Aoki (Japan)

16.45-17.00 Intracerebellar injection of AAV IGF-1 improves motor function and extends survival in a mouse model of ALS JC Dodge (USA)

17.00-17.15 Characterization of Colivelin-mediated neuroprotection against ALS-relevant insults T Chiba (Japan)

17.15-17.30 NgR antagonizes p75NTR-dependent motor neuron death: implications for ALS F Rene (France)

17.30-17.45 VEGF rescues the loss of activated Akt preceding motor neuron degeneration in ALS .L Van Den Bosch (Belgium)

SESSION 8B INTERNATIONAL PERSPECTIVES ON CARE & QUALITY OF LIFE

16.00-16.30 Individual ALS care in the Japanese enanbyof care model: comparison with palliative care approaches in achieving best quality of life .T Nakajima (Japan)

16.30-16.45 What can we learn about living with ALS/MND from personal illness narratives posted on the Internet? .MR O'Brien (UK)

16.45-17.00 House calls: multidisciplinary outreach medicine for the homebound ALS patient .PL Allred (USA)

17.00-17.15 A study of covariates of fatigue in ALS .EP Simpson (USA)

17.15-17.30 Intrathecal baclofen pump for treatment of medically refractory rigidity and spasticity in patients with motor neuron disease .R King (USA)

SESSION 8C EPIDEMIOLOGY & GENETICS

16.00-16.15 Occupational risk factors in sporadic ALS: a systematic review .NA Sutedja (Netherlands)

16.15-16.30 Incidence of ALS in Lombardy, Italy .E Beghi (Italy)

16.30-16.45 A meta-analysis of the incidence of ALS in Europe: the EURALS collaborative study .G Logroscino (USA)

16.45-17.00 Angiogenin polymorphisms modify age-at-onset in sporadic ALS ? H Kahn (USA) 17.00-17.15 Evaluation of linkage of ALS/FTD to chromosome 9q with the establishment of new linkage to 9p21 .J Yan (USA)

17.15-17.30 Comprehensive analysis of causative and related genes for ALS using a high throughput DNA microarray-based resequencing system .Y Takahashi (Japan)