• Duchenne Muscular Dystrophy (DMD) is a progressive neuromuscular disease that destroys muscle tissue and it is currently fatal.

• It is the most common, lethal genetic disorder diagnosed during early childhood.

• One in every 3,500 baby boys are born with DMD worldwide.

• there ‘are in excess of 250,000 children and young adults living with DMD.

• There is no treatment or cure at present.

• DMD knows no cultural, ethnic, economic or social boundaries; it can happen to any family.

• As in our family, it can happen randomly, in up to about 35% of cases i.e: with no previous family history.

• DMD is typically diagnosed in children between the ages of 3 and 7.

• It almost exclusively affects boys, causing them to be wheelchair bound, usually between 8 – 12 years of age and leaves them fighting for their lives by their late teens to early twenties.

• In The Republic of Ireland, at this time there are known to be approximately 110 people living with DMD; the majority of these are under 18 years of age.

• In the UK, 100 boys a year are born with DMD and 2 boys die each week of the disease, making it one of the world’s biggest genetic killers.

• It is now estimated that globally 200,000 children are diagnosed with DMD.

• DMD is caused by a lack of dystrophin, a protein in the muscle, which would otherwise hold the muscles together.

• There is a lack of awareness of DMD worldwide.

• There is a severe lack of funding for research into DMD Internationally.

• The research is complex, lengthy and because of this it is expensive.

• Likely behavioural characteristics include limited social skills, attention deficits and depression. The implications for families living with DMD are devastating, resulting in multiple losses, on many different levels.

• As soon as any family is given a DMD diagnosis they are changed forever.

• The human cost to all families affected by DMD is immense and immeasurable.