How we Empower kids/patients with Pfeiffer Syndrome - We love our Pfeiffer’s community and strive to support our patients and families in any way we can. We are equipping them with resources that will improve their lives. We are supporting our patients by being a reliable source that they can turn to; whether it is receiving input or advice from our Medical Team, guidance from our Board, or by having access to our social media support groups.
How we Fight to improve quality of life for patients and their families - Our main focus is research. With the help of our sponsors, donors, and State Fundraising Coordinators, we fight to have a stable and continuous research program. We have a Medical Board with distinguished Doctors from all over the country that are enthusiastic about helping our Pfeiffer’s community. Dr. Ethylin Jabs leads our research team with over 20 years of experience studying craniosynostosis
How we Educate the public - We are creating awareness by being on the news, shows, and social media networks. We are filming a documentary, writing articles, and are involved with advocacy groups. We meet with congressmen and women to represent BORN A HERO and encourage legislation that will benefit the Pfeiffer’s and Rare Disease patients. We attend conferences and speak on behalf of our Pfeiffer’s community. We are hosting an annual event to raise public awareness on different rare medical conditions. We are organizing library events/story times to teach kids to celebrate differences. We believe in the power of words and we are fighting to change the way the term ‘special needs’ is used.
How we Recognize the hero in each child/patient - We urge people to see the beauty in our Pfeiffer kids/patients. We want the world to see them as we do – heroes. We are writing a series of books to teach our kids about Pfeiffer Syndrome and how to love and appreciate differences. Some actions we are taking to address social issues are: speaking at assemblies, introducing books into school’s curriculum, and creating events that will teach kids to “choose kind.”
What BORN A HERO Is All About
We 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.
Pfeiffer Syndrome Awareness
Pfeiffer syndrome affects about 1 in 100,000 individuals
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