PRESS RELEASE
FOR IMMEDIATE RELEASE
Jan 22-Jan 31
Save a child’s life with a simple vote.
The Boyce family, Beach Park, IL, received news no parent wants to hear Oct 09. Both children, Jayden, 4, and Brooklyn, 1, will die from a rare genetic disorder in their teen years, called Sanfilippo. Sanfilippo (MPSIIIA) currently has no treatment or cure. Their little bodies can’t break down hephran sulphate, a sugar the body naturally makes and stores primarily in the central nervous system and brain. Over time, their bodies loose all function and developmentally they never progress past the age of two. Because of the rare nature of the disease, effecting 1 in 70,000 children, it is not profitable for pharmaceutical companies to invest in research. It becomes the sole responsibility of loved ones to raise money for research. However, the Boyce’s are part of a parent organization, Team Sanfilippo Foundation, who is currently in the running for a $250,000 grant through the Pepsi Refresh Project to fund gene therapy research.
There are three ways to vote and you can help the family by simply casting votes and telling friends to do the same.
Text 105582 to the number 73774.
Go to www.refresheverything.com/curesanfilippo . Create a profile and vote with all e-mail and facebook accounts you have.
You can also search refresh everything on facebook.
Voting ends January 31, at midnight. To learn more about the Boyce family, visit http://www.buildwiththeboyces.com/
Jan 22-Jan 31
Save a child’s life with a simple vote.
The Boyce family, Beach Park, IL, received news no parent wants to hear Oct 09. Both children, Jayden, 4, and Brooklyn, 1, will die from a rare genetic disorder in their teen years, called Sanfilippo. Sanfilippo (MPSIIIA) currently has no treatment or cure. Their little bodies can’t break down hephran sulphate, a sugar the body naturally makes and stores primarily in the central nervous system and brain. Over time, their bodies loose all function and developmentally they never progress past the age of two. Because of the rare nature of the disease, effecting 1 in 70,000 children, it is not profitable for pharmaceutical companies to invest in research. It becomes the sole responsibility of loved ones to raise money for research. However, the Boyce’s are part of a parent organization, Team Sanfilippo Foundation, who is currently in the running for a $250,000 grant through the Pepsi Refresh Project to fund gene therapy research.
There are three ways to vote and you can help the family by simply casting votes and telling friends to do the same.
Text 105582 to the number 73774.
Go to www.refresheverything.com/curesanfilippo . Create a profile and vote with all e-mail and facebook accounts you have.
You can also search refresh everything on facebook.
Voting ends January 31, at midnight. To learn more about the Boyce family, visit http://www.buildwiththeboyces.com/
