hi my name is tony pearson im raising money for a charity which is very close to me and my wife . My 16 month old daughter grayce pearson was diagnosed with spinal muscular atrophy type 2 . Two months ago and im raising funds for the charity to continue the fight to pioneer research treatments and a continued quality of life for those with the condition and with continued physio and strength to help those stand and walk i will be doing the edinburgh kilt walk on the 15th of september 2024 . SMA is a very rare condition which is not talked about alot which needs to change And hoping the goverment will hopefully soon screen for this condition at birth and during pregnancy which they do with other conditions . which is frustrating why they dont test for it to give those who have it a better and brighter future . The work this charity do for those who have sma is amazing for the families and relatives to help them is second to none

and if sma was screened during pregnancy and the second the child is born the child can start gene therapy and once they start gene therapy they will have a better chancd of hitting there milestones as they grow up but because its not screened then the child has to go through treatment to try and build up the protein that has started to die inside there body WE MUST START SCREENING FOR SMA AT PREGNANCY AS THEY DO WITH DOWN SYNDROME PLEASE HELP ME FIGHT THE GOVERMENT TO CHANGE THERE POLICY AS THEY REFUSE TO SCREEN FOR IT

If treatments are administrated in the first weeks of being born, children can grow up to have little to no srideymptoms… a very big difference from not making their second birthday….! To have the biggest impact however, treatment needs to be administered pre-symptomatically. This requires babies to be screened for SMA at birth.

SMA is currently being screened for within more than half of European Union member states, and nearly two-thirds of Europe geographically, including countries such as Russia and Turkey, but the UK is not currently one of them. In June last year, Ukraine started screening for SMA in the middle of a war. The Republic of Ireland, Luxembourg and Slovakia all launched a newborn screening programme in 2023, and in January 2024, the USA introduced 100% testing across the entire country.

Families of infants paralysed by spinal muscular atrophy demand the Government adds the condition to ones tested for in the heel prick test, done on babies at five days

Experts have called the five-year delay by the Government’s National Screening Committee a national medical emergency. Dozens of countries, including the US, Australia, Japan, Russia, most of the EU and even war-torn Ukraine have introduced the simple test.

SMA

Spinal Muscular Atrophy (SMA) is a rare, debilitating, and incurable genetic neuromuscular disorder. In the UK, 4 babies are born with SMA each month – of which 60% are diagnosed with the most severe form, Type 1 SMA. Until recently, babies with Type 1 SMA would have died before their 2nd birthday. I’ll let that sink in for a second…

Newborn screening

If treatments are administrated in the first weeks of being born, children can grow up to have little to no symptoms… a very big difference from not making their second birthday….! To have the biggest impact however, treatment needs to be administered pre-symptomatically. This requires babies to be screened for SMA at birth.

SMA is currently being screened for within more than half of European Union member states, and nearly two-thirds of Europe geographically, including countries such as Russia and Turkey….but the UK is not currently one of them. In June last year, Ukraine started screening for SMA in the middle of a war. The Republic of Ireland, Luxembourg and Slovakia all launched a Newborn screening programme in 2023, and in January 2024, the US introduced 100% testing across the entire country.

Although the UK announced that a pilot will be set up, it could be years until all babies are tested across the UK.

Baby grayce daddys doing this for you and the rest of the amazing sma clan were all in this together xxx