Miracle 4 Maddi
Donation protected
Maddison has an genetic condition called Sanfilippo Syndrome, otherwise known as MPSIIIC.
For Maddison, and many other children around the world with Sanfilippo Syndrome, the future is not so bright. It is cut short with the inevitability of loss of speech, hearing, feeding, sight, mobility, brain function and eventually death. The nature of Sanfilippo Syndrome is neurodegenerative and is likely to prevent Maddison from seeing the end of her teenage years. As every day goes by, we are watching little parts of Maddi slip away.
Unfortunately, due to the rarity of the disease (occurring in 1 in 1.5 million births), we receive no government funding to help us find a cure. The reality is that most drug companies don't see the financial value in producing and commerciali`ing a drug for our dying children and therefore all research and funding is patient led.
It's up to the parents of Sanfilippo children to fight their fate, and the clock is ticking!
Ten years ago a group of foundations (otherwise know as H.A.N.D.S) across the world found each other and have banded together to raise millions of dollars towards research and a treatment for Sanfilippo Syndrome C. The good news is, we found the treatment! The treatment is Gene Therapy. Gene Therapy binds a virus to the missing enzyme that our children are missing and stops the degeneration of the disease.
Our scientists have proof of concept and we are now ready to manufacture our vector in large quantities so that we can conduct a clinical trial. For this we need your help in funding! Be part of something that you can smile about. Help our Sanfilippo type C families fund the production of a drug that will halt this disease for many of our surviving children and save the lives of the next generation to come.
Find out more
Promotional video: https://youtu.be/fBD1E68GfnE
Facts: http://www.mpssociety.org.uk/diseases/mps-diseases/mps-iii/
Contact us
Facebook: www.facebook.com/miracle4maddi
Email: [email redacted]
or search #miracle4maddi on all major social media sites
Publications
The Mirror: https://www.mirror.co.uk/news/real-life-stories/girl-8-rare-condition-means-6772127
SpiritFM: https://www.spiritfm.net/news/sussex-news/1944425/boxing-fundraiser-for-terminally-ill-girl/
Portsmouth News: https://www.portsmouth.co.uk/health/dozens-rally-for-eight-year-old-portsmouth-girl-with-terminal-condition-1-7223673
Great Run: https://www.greatrun.org/news-and-media/news/maddi-runs-junior-south-run-despite-terminal-illness#QOKGyAJlZ7GcjD1e.97
Wow247: http://www.wow247.co.uk/2016/04/29/portsmouth-this-may/
Webstergram: https://www.webstagram.one/media/BLrN_dNgoCd
For Maddison, and many other children around the world with Sanfilippo Syndrome, the future is not so bright. It is cut short with the inevitability of loss of speech, hearing, feeding, sight, mobility, brain function and eventually death. The nature of Sanfilippo Syndrome is neurodegenerative and is likely to prevent Maddison from seeing the end of her teenage years. As every day goes by, we are watching little parts of Maddi slip away.
Unfortunately, due to the rarity of the disease (occurring in 1 in 1.5 million births), we receive no government funding to help us find a cure. The reality is that most drug companies don't see the financial value in producing and commerciali`ing a drug for our dying children and therefore all research and funding is patient led.
It's up to the parents of Sanfilippo children to fight their fate, and the clock is ticking!
Ten years ago a group of foundations (otherwise know as H.A.N.D.S) across the world found each other and have banded together to raise millions of dollars towards research and a treatment for Sanfilippo Syndrome C. The good news is, we found the treatment! The treatment is Gene Therapy. Gene Therapy binds a virus to the missing enzyme that our children are missing and stops the degeneration of the disease.
Our scientists have proof of concept and we are now ready to manufacture our vector in large quantities so that we can conduct a clinical trial. For this we need your help in funding! Be part of something that you can smile about. Help our Sanfilippo type C families fund the production of a drug that will halt this disease for many of our surviving children and save the lives of the next generation to come.
Find out more
Promotional video: https://youtu.be/fBD1E68GfnE
Facts: http://www.mpssociety.org.uk/diseases/mps-diseases/mps-iii/
Contact us
Facebook: www.facebook.com/miracle4maddi
Email: [email redacted]
or search #miracle4maddi on all major social media sites
Publications
The Mirror: https://www.mirror.co.uk/news/real-life-stories/girl-8-rare-condition-means-6772127
SpiritFM: https://www.spiritfm.net/news/sussex-news/1944425/boxing-fundraiser-for-terminally-ill-girl/
Portsmouth News: https://www.portsmouth.co.uk/health/dozens-rally-for-eight-year-old-portsmouth-girl-with-terminal-condition-1-7223673
Great Run: https://www.greatrun.org/news-and-media/news/maddi-runs-junior-south-run-despite-terminal-illness#QOKGyAJlZ7GcjD1e.97
Wow247: http://www.wow247.co.uk/2016/04/29/portsmouth-this-may/
Webstergram: https://www.webstagram.one/media/BLrN_dNgoCd
Organizer
Jorden Evans & Shelly Reid
Organizer
