Livie's "Pink Friday"
Donation protected
Livie's Story
Little Livie (you'll see her photo attached) has been diagnosed with a rare and serious genetic neuromuscular condition called spinal muscular atrophy (SMA) type 1. SMA is caused by a gene deletion which results in deterioration of Livie’s nerve cells connecting her brain and spinal cord to her body’s muscles. There is no cure and Livie has its most severe type. Livie’s muscles used for activities such as crawling, walking, sitting up, moving her head, and even swallowing and breathing, are becoming progressively weaker and shrinking. Without any treatment, little Livie’s condition would continue to deteriorate and it would be unlikely that she would live past her 2nd birthday. Every child with SMA is different and little Livie’s future is very uncertain.
Treatment options for little Livie are very limited. Our best hope for Livie is a once-off gene therapy called Zolgensma, which is currently only available in USA. It costs approximately US$2,100,000. Studies have shown that Zolgensma can substantially improve quality of life. Livie's antibody test qualifies her for the treatment. We are against the clock as Zolgensma is only available to children under the age of two years.
So, how can you help?
It's quite simple really, on Friday July 31st, 2020 we are asking workplaces and companies to join us in a fun little fundraising event:
✅ Ask your employees to "Go Pink" for Livie for the day... wear pink, either to the office or working from home. T-shirts, wigs, shoes anything counts. You can be as fun, silly and ridiculous as you wish.
✅ If possible, those taking part would submit a small donation to this GoFundMe account for Livie's Pink Friday.
✅ Most importantly, share your bright and fun photos on Social Media to spread awareness and help us get as much people involved in our efforts as possible. You can add the hashtag #teamlivie and #PinkFriday to help do this and link to "Livie's Pink Friday" (this page).
You will find so much more information about Livie on our Facebook: https://www.facebook.com/abetterlifeforlivie/
For those who really want to get on board, there are Team Livie t-shirts and jumpers available (all proceeds to the fundraiser) from All Sports Store online: https://www.allsportstore.com/en/Team-Livie-Range-TeamLivie/c-546.aspx
Thank you all,
Ashling and Amanda (Team Livie)
Little Livie (you'll see her photo attached) has been diagnosed with a rare and serious genetic neuromuscular condition called spinal muscular atrophy (SMA) type 1. SMA is caused by a gene deletion which results in deterioration of Livie’s nerve cells connecting her brain and spinal cord to her body’s muscles. There is no cure and Livie has its most severe type. Livie’s muscles used for activities such as crawling, walking, sitting up, moving her head, and even swallowing and breathing, are becoming progressively weaker and shrinking. Without any treatment, little Livie’s condition would continue to deteriorate and it would be unlikely that she would live past her 2nd birthday. Every child with SMA is different and little Livie’s future is very uncertain.
Treatment options for little Livie are very limited. Our best hope for Livie is a once-off gene therapy called Zolgensma, which is currently only available in USA. It costs approximately US$2,100,000. Studies have shown that Zolgensma can substantially improve quality of life. Livie's antibody test qualifies her for the treatment. We are against the clock as Zolgensma is only available to children under the age of two years.
So, how can you help?
It's quite simple really, on Friday July 31st, 2020 we are asking workplaces and companies to join us in a fun little fundraising event:
✅ Ask your employees to "Go Pink" for Livie for the day... wear pink, either to the office or working from home. T-shirts, wigs, shoes anything counts. You can be as fun, silly and ridiculous as you wish.
✅ If possible, those taking part would submit a small donation to this GoFundMe account for Livie's Pink Friday.
✅ Most importantly, share your bright and fun photos on Social Media to spread awareness and help us get as much people involved in our efforts as possible. You can add the hashtag #teamlivie and #PinkFriday to help do this and link to "Livie's Pink Friday" (this page).
You will find so much more information about Livie on our Facebook: https://www.facebook.com/abetterlifeforlivie/
For those who really want to get on board, there are Team Livie t-shirts and jumpers available (all proceeds to the fundraiser) from All Sports Store online: https://www.allsportstore.com/en/Team-Livie-Range-TeamLivie/c-546.aspx
Thank you all,
Ashling and Amanda (Team Livie)
Fundraising team: Team Livie (Pink Friday) (2)
Amanda McHugh
Organizer
Team Livie
Beneficiary
Ashling Stewart
Team member
