BORN A HERO has joined the ThinkGenetic Advocacy Partner Program to help educate the world about children and others with the genetic condition Pfeiffer syndrome. Through this partnership, more people will learn about what it means to live with Pfeiffer syndrome, and how to celebrate unique differences in each of us.
“Most people don’t know the true experience about Pfeiffer Syndrome,” explains BORN A HERO Founder and CEO, Carolina Sommer. “We believe by becoming an Advocacy Partner with ThinkGenetic, in combination with our research projects, we can change misconceptions about Pfeiffer and encourage continued education.”
Pfeiffer syndrome is a rare genetic condition where the bones in the skull fuse or come together too soon (called craniosynostosis); other health issues are also typically involved as well. Normally, the skull grows evenly at many fibrous joints (soft spots) as a child’s brain grows. The timing of this is critical. If one or more of these fibrous joints fuses too early, this causes a misshapen head and characteristic facial features that may be apparent during infancy. The facial characteristics of Pfeiffer syndrome usually include a prominent forehead, wide-set eyes, protruding eyes, and flattened mid-face. Surgery may be necessary to allow the brain and eyes the room they need to grow, and people with Pfeiffer syndrome often need many surgeries in their lifetimes.
One of BORN A HERO’s mission is to change what the Internet says about Pfeiffer syndrome. A current misunderstanding is that Pfeiffer syndrome is a craniosynostosis condition alone. The reality of living with the condition can be so much more. Kids with non-syndromic craniosynostosis (not Pfeiffer syndrome) may have one surgery and continue to live a healthy life. However, Pfeiffer syndrome can affect the whole body – anywhere an extra bone is growing or bones are fusing early, can be affected.
“I am pleased to be able to use the global reach of the ThinkGenetic platform to help the good people at BORN A HERO advocate for those affected by Pfeiffer syndrome,” said Len Barker, ThinkGenetic President and Co-Founder. “We are committed to shortening the time to accurately diagnose genetic disorders and leading people to helpful answers about living with these disorders. Our active Advocacy Partnership Program is vital to fulfilling that mission.”
ThinkGenetic boosts awareness of Pfeiffer syndrome and other genetic disorders through its resources for patients, families, and those that are undiagnosed.
About the ThinkGenetic Advocacy Partner Program: ThinkGenetic enters into Advocacy Partner agreements with organizations, support groups and charities to share information, increase public awareness of genetic conditions and provide trustworthy resources to those living with or caring for someone with a genetic disorder. Learn more and view current partners at news.thinkgenetic.com/advocacy-partner-program or email advocacy@thinkgenetic.com for information about enrollment in the program.
About BORN A HERO: Our Mission is to EMPOWER kids with Pfeiffer syndrome. We FIGHT to improve quality of life for patients and their families. We STRIVE to educate the world so people RECOGNIZE the HERO that lives in each Pfeiffer’s child. Learn more at http://www.bornahero.org/.
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