AdaptHealth Patient Care Solutions (AHPCS) publishes an award-winning e-newsletter, “The EB Advocate.” “The EB Advocate” contains articles about the EB community, as well as helpful information for people living with EB such as featured healthcare products, insurance tips and special events.
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5 Questions with an EB Advocate: Ashley Cedeno
Here is the newest installment of our series where we spotlight a person who, like the AHPCS EB Advocate team, strives to help people who have Epidermolysis Bullosa (EB) lead healthier lives.
Name: Ashley Cedeno
Profession: Medical Assistant
Home State: Pennsylvania
Something Unique about Yourself: I am a really big gamer, and I play roller derby.
How did you first become aware of Epidermolysis Bullosa?
My son Kiba was born with EB.
How do you advocate for the EB community?
We do fundraisers to bring the community together, so they can better understand EB. My mom also started a committee (Kisses for Kiba), and on January 19th we become a non profit organization. Our goal is to help other EB families in need.
Which fact about EB do you share most often?
That EB has no cure. They have different studies going on but no cure.
What motivates you to accomplish your goals?
Everyone motivates me! We get together once a month for the Kisses for Kiba committee, and Kiba is our driving force!