1. ALS and Neuromuscular Diseases in Latvia Viktorija Ķēniņa M.D., Ph.D Neuroimmunologist at P. Stradins Clinical University Hospital

2. Amyotrophic Lateral Sclerosis ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries Familial causes comprise only about 5% of ALS cases Improvements in medical management, including nutrition and breathing, regularly improve the chances of patient survival Some patients (up to 10 percent) will survive more than ten years Center for ALS Research and Therapy

3. Progressive motor neuron disorder with weakness, atrophy, spasticity, respiratory failure, problems with swallowing, speech and behaviour (incidence is roughly 2 people per 100,000 per year ) M.Sabatelli. ALSJounal. 2011 Most people who develop ALS are between the ages of 40 and 70

4. We dont know our group….. Possibility to participate in ALS and other trials, to talk about this problem with the World Most common form Age of onset Genes Life expectancy LATVIAN/BALTIC /NORDIC Neuromuscular Disease Register

5. Time from onset of symptoms to diagnosis Education (doctors, patients, assistants, relatives…..) Multi-disciplinary teams

7. CENTRE for Neuromuscular Diseases Delay in diagnosis 9 – 11+ months from onset of symptoms Absence of educational information Failures to discuss issues with all related groups Multi-disciplinary teams are the cornerstone - nearly all symptoms can be managed, if we know HOW!!!!!!!

8. CENTRE for Neuromuscular Diseases Patients’ organisation MOTUS VITA Education Professional organisations Register Support

12. Medication (150 Euro) Respiratory Management (300 Euro) Nutrition Management (300 Euro) Palliative Care (?????) Government Programs and NGOs, who can support us

13. Structural change of the health care system LATVIAN/BALTIC/NORDIC Neuromuscular Register LATVIAN/BALTIC/NORDIC Neuromuscular Register CENTRE of Neuromuscular Diseases Support from other organisations, clinics, centres Participation in educational programmes for doctors, patients, carers…

14. WE CANNOT DO THIS ALONE WE NEED YOUR SUPPORT WE CANNOT DO THIS ALONE WE NEED YOUR SUPPORT