SMA awareness month: An illness impacting 1 in 6000 babies globally
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SMA awareness month: An illness impacting 1 in 6000 babies globally
Aug 14, 2022
Global News
Every month in the UK, four babies are born with spinal muscular atrophy - SMA - a rare but debilitating genetic condition. If left undiagnosed and untreated, many children with the most common form of SMA do not live beyond their second birthday. Despite this, the condition is not included in the newborn national screening programme - the heel prick test. Our health and social care editor Victoria Macdonald speaks to one family whose son wasn’t diagnosed until he was four months old. #SpinalMus
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Khrystal and Curtis are proud parents of 7-year-old Hunter, who is living with spinal muscular atrophy (SMA). Raising a child with #SMA means your role as a parent may involve caregiving. This National Family Caregivers Month, tune in to hear from inspiring parents like Khrystal and Curtis, who are making an impact in the SMA community. #NFCMonth | Genentech
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At eight months old, Emma was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. A breakthrough treatment approved only six months earlier gave her family new hope. | Seattle Children's
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“My 4-year-old suffers from a rare condition called SMA Type 2. This is forcing her muscles to give up. Today her condition has worsened as she’s not able to breathe properly. Her condition is slowly taking her life and I can’t help but cry and ask you to please save my daughter’s life! She’s all that I have and I don’t know what I’ll do if something happens to her. Please save her before she runs out of time!” –cries Ayna’s helpless mother. Donate Now -https://bit.ly/3NmtqrA | Impact Guru
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When her son was diagnosed with spinal muscular atrophy (SMA), Nikki knew her family would need resources and guidance. What she discovered early on was that the best resource was the #SMA community itself. Our researchers are working hard to better realize and address the obstacles families like Nikki’s face on a daily basis. This National Family Caregivers Month, help us share the stories of caregivers who make up such an important part of this community. #NFCMonth | Genentech
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