June is Apert Syndrome Awareness Month!
As summer sets in, let’s take a moment to learn a little more about this rare disease and do our part to raise some awareness!
Apert syndrome is a rare genetic disorder that is characterized by an abnormal development of the skull, which is seen in babies with a distorted shape of the head and face. In addition, many children also have other birth defects and mental retardation.
So what are some resources you can visit to learn more and stay connected with the community?
FACES provides financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need. Resources include newsletters, information about craniofacial conditions, and networking opportunities.
The website was made and run by the family of Elizabeth Sears, aka Teeter, who is diagnosed with Apert syndrome. It’s a great place to connect with others and raise some money.
The Children’s Craniofacial Association is a national, nonprofit organization, headquartered in Dallas, Texas. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.
Visit Dr. Jeffrey Fearon’s informative website that is very lay-friendly (easy on the medical jargon!) and simple to understand.