Q & A with EB Advocate Kristina Wyatt, Part II

Last week, we shared part I of our interview with graphic designer Kristina Wyatt and learned how she was introduced to epidermolysis bullosa and what inspired her to launch her website EBAwareness.com and its evolving advocacy arm, The Butterfly Network. This week, we continue with part II and find out how she is collaborating with other EB advocates to make a difference.


EB Resource (EBR): You’ve done some collaborating with other advocates in the EB community, including Christie Zink. What have been some of the ways you’ve been able to effectively combine talents and resources to support EB patients and their families?

Kristina Wyatt (Kristina): Working with Christie has been a blessing. The very first thing Christie approached me with was for the I Refuse Campaign, in which I developed the designs and branding for many of her materials, such as the iconic logos on the I Refuse t-shirt and the portrait of Bella Ringgold, daughter of PUCK director, Tim Ringgold.

EBR: From your own communication with families and organizations that are focused on EB research and supporting EB families, where do you see there being the greatest need in the EB community? Financial support? Research? Education? Some other resources?

Kristina: Undoubtedly, the EB community could benefit from an increase of any of these resources. I personally believe that an increase in awareness would be the best start, and I am hoping that The Butterfly Network will assist in this goal. I think the effect would be like a chain reaction: the more people spreading awareness, the more people become "in the know" about the Worst Disease You Never Heard Of … the more people who know, the more who are moved to act … the more people who act, the more awareness and potential funds to be raised for research. The disease may be rare, but the idea and the knowledge need not be rare, as well.

EBR: What do you personally take away from your work at EBAwareness.com and the Facebook page?

Kristina: When I started devoting myself to working with the EB community, I honestly believed there wasn’t much I could do. I wasn’t rich enough to donate substantial amount of money to research, I wasn’t famous enough to move people to action – I was just this working mom trying to make ends meet. I realize now, with what I have done in a short amount of time, that everything helps. If you can do something, do it, no matter what it is, because it will affect and influence somebody, somewhere. The fact that I have been able to help – in any definition of the word – people with my work, I take away a sense of accomplishment and a sense of worth. My goal in life was to find something I love to do and be happy doing it, not just working to make ends meet. I care so much about each person in the EB community, so in doing the things I do, I know I have reached my goal.

EBR: If somebody wants to get involved with EBAwareness.com, what are the ways they can do so?

Kristina: As I mentioned before, EBAwareness.com will be evolving into the advocacy program, The Butterfly Network. Once it is launched, we will need all the advocates we can get! Look for announcements in The Butterfly Network Facebook community for more details on how to become part of the movement and what you can do to get involved. Join the movement, share your stories, and spread awareness!

EBR: What kind of impact has learning about EB and getting to know the families had on your perspectives on motherhood and life in general?

Kristina: I have always considered myself a strong person, and an even stronger mother. However, any strength I have could never compare to the strength I see in every EB patient and every parent blessed with a butterfly. I have them all to thank for giving me this selfless purpose, and for leading me to make my risky decision of becoming a stay-at-home mom. I have them to thank for the realization that nothing else is more important than my family.

EBR: If you could share any message with the general public about EB, what do you feel is most important for them to know to truly understand what this community faces on a daily basis?

Kristina: The more you care, the more hope is given to all those who suffer from EB. Their day-to-day battles create a life that rarely stops, and pain and heartache is their normalcy. We need to come together and give the time they do not have. We need to offer the same strength they have just to live. Our actions can influence the hope that there may be an end to their suffering.

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