making muscle wasting history

We had a very successful lobby of MLAs at Stormont at which we demanded improved standards of care. Mr David Galloway from the Department gave solid promises to press for the successful recruitment of two neurological consultants and to create a care pathway for each boy tailored to their individual needs. This is something that they now understand is necessary.
We will be actively following up on all promises.
Carmel Hanna MLA also attended and was again very supportive of our cause and pledged to press the Minister for immediate change and improvement.
We need all families to do whatever they can to demand proper care for their boys from the Clinic, their GPs and from politicians. Do not just accept poor care standards as your boys cannot afford that.