Our one-of-a-kind EB Connect community is made up of individuals and families living with and working in EB. The EB Connect Spotlight series highlights these individuals and their unique stories. Today’s spotlight shines on Melissa Barriga, a Clinical Research Coordinator at Stanford University who grew up with 3 family members diagnosed with RDEB.
1. What was your first experience hearing about EB? Do you know any community members or friends that have been diagnosed?
I have male cousins (the boys) diagnosed with RDEB and we’ve been playmates since before I can remember (I have the baby pictures to prove it). I also have a hometown friend with EB.
2. What led you to be interested in working as a clinical researcher?
The boys, first and foremost. I also researched EB quality of life as an undergrad and interviewed EB patients for some graduate research. The boys themselves participated in research during that time, all of which piqued my interest in EB research.
3. Tell us about some of the things you have found most interesting throughout the course of your career.
The history and science of the gene transfer study at Stanford is most interesting. There were so many people involved from many different departments for over a decade to make this clinical trial a reality. It’s very impressive.
4. How has being a part of the small community of those affected by EB impacetd your outlook on life, if at all?
This is a tough question……it definitely changes my outlook on life all the time and in different ways.
5. What message would you like to share with those impacted by EB?
You are your best advocate and there’s a community of people out there that would like to help you meet your goals!
6.What message would you like to share with those whose lives have not been affected by EB?
I hope you’re able to connect with someone in this community. There are so many wonderful people all throughout the EB community, from families to nurses, and scientists.
7. How did you hear about debra of America?
When I was first researching EB as an undergrad I found many wonderful resources on the website. I subscribe to the newsletter and love all of the content.