Today a group of TreatSMA families attended a meeting of the All-Party Parliamentary Group for Muscular Dystrophy at the House of Lords.
The meeting was chaired by Mary Glindon, MP and was organised by Muscular Dystrophy UK. Other than 10 TreatSMA families, present were also other peers, SMA Support UK, SMA Trust, doctors, representatives of the NHS and officials from the Great Ormond Street Hospital in London.
The meeting was about access to treatment. TreatSMA families, many of whom travelled from far away, talked about their living experiences of SMA. It was hard to fight back tears.
It is necessary that our cause is heard loud and clear on the decision-making level at the Parliament and Government. Today’s meeting was an important step in our struggle for treatment for all.