Twins with neurodegenerative disease - No neurology since 2015 - help us fight for life
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WE FEEL MEDICALLY IMPRISONED IN OUR COUNTRY
Identical twins with a progressive neurodegenerative disease live in the Republic of Ireland. We have no neurologist and receive no medical input into a very Rare disease. (Specialists at 'Centres of Excellence' name this as 'rare' and 'complex.'
We live with no therapies and no diagnosis and no expert help and no neurologist overseeing our decline. Expert consultants UP UNTIL 2015 ABROAD, name this as 'a heavy disease burden' and also a 'serious 'progressive neurodegenerative disease.'
- We need help to get a supportive neuromuscular clinical specialist in a country which has a very small number of neurologists for our population.
- we badly need more testing on our muscle wasting disease as recommended by two centres of excellence abroad and four top consultants there. We hope You will stand with us in our fight, its been a difficult time and frightening as well.
Our aim is to return to a 'Centre of Excellence' outside of Ireland
Demand Ireland healthcare providers provide the care we need which to date has not happened.
WE FIND THIS FIGHT TOO GREAT ALONE - PLEASE HELP US GET AT LEAST 300 SIGNATURES OF SUPPORT FOR OUR NEEDS TO BE MET AT THE END OF OUR DAYS IN THE REPUBLIC OF IRELAND. THIS VIOLATES HUMAN RIGHTS AND OUR RIGHTS TO EQUALITY OF CARE PROVISION.
CAN YOU WRITE TO YOUR TD'S? CAN YOU WRITE TO THE DIRECTOR OF THE HSE? CAN YOU WRITE TO US AND GIVE US ADVICE ON WHAT WE SHOULD DO TO MAKE ALL THIS HAPPEN?
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