A celebrity is pitching in to help the rare disease community? Stranger things have happened.
Gaten Matarazzo, one of the leads of the Netflix original series Stranger Things
(which premiered its second season last week), is using his star to help patients with cleidocranial dysplasia (CCD).
Matarazzo, one of the 9 diagnosed CCD patients in Utah, believes that some of his struggles in landing roles early in his career came because of his condition. Now, though, as one of the leads on Netflix’s most-streamed show, he has the platform to educate others about CCD, and is doing so as part of a partnership with the newly-formed non-profit CCD Smiles
CCD Smiles is a joint effort between Matarazzo’s family and Dr Kelly Wosnik, a nurse practitioner in Mapleton, Utah who also lives with the rare disease.
The organization works to bring global awareness, provide financial assistance for dental care, and support research to improve outcomes and quality of life for individuals living with CCD. The genetic skeletal disorder is frequently caused by mutations to the RUNX2
gene and is characterized by open fontanelles, small or absent clavicles, and multiple dental abnormalities.
Per the National Institute of Health (NIH)
, the condition occurs in an estimated 1 individual per every million, and it can either be random or passed down from an affected parent.
“When I started auditioning, I was being declined for roles over and over and over again,” said Matarazzo in an interview with KUTV
in Salt Lake City, Utah. “The excuses were either that I was too short or because my teeth were just too messed up.”
Often times in patients with CCD, baby teeth don’t fall out on their own, permanent teeth need assistance when growing in, and most insurance companies refuse to cover the expensive surgical procedures that are required to remove the extra teeth because issues pertaining to the teeth are considered “cosmetic.”
“The reason I started CCD Smiles was because so many surgeries are required,” said Wosnick in the interview. “I don’t think there’s anything about having teeth that is cosmetic.”
On the CCD Smiles website, Wosnick states that she was starting to have teeth pulled at age 7, and she spent most of her winter, spring and summer breaks from school undergoing surgery, the most recent of which came when she was 19 years old. Her work to create CCD Smiles began in 2013, and with help from Matarazzo, exists today.
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Image courtesy of Gage Skidmore; WikiMedia Commons