New episode of Butterfly Talk ready to view! It’s EB Awareness Week! My guest today is Jodie Gillon, who is the VP of Patient Advocacy and Clinical Affairs for Abeona Therapeutics and EB-101. To Enroll in EB-101: https://www.abeonatherapeutics.com/cl… Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and celebrating our amazing kids.Enjoy and I hope it’s helpful! Thank you for watching! Post Views: 157Read More →

This was an important week for Epidermolysis Bullosa Awareness. An article about a boy in Germany that was treated with skin grafts from Dr. De Luca in Italy is making the rounds around the world. (Here’s the link for the CNN article). The original research article that was published on Wednesday (the link is here) explains how it was all done. It’s complicated stuff, but here’s a quote from the CNN article that explains how it works: To obtain the skin’s stem cells, the doctors took a small biopsy — only accounting for 1½ square inches — from an unaffected part of the boy’s skin. The stem cells were processed by De Luca in Italy. A healthy version of the gene that is normally defective in epidermolysis bullosa patients was added to the cells, along with retroviral vectors: virus particles that assist the gene transfer. Needless to say I receivedRead More →