Q & A with EB Advocate Kristina Wyatt, Part I

We were excited when we first discovered the website EBAwareness.com and its beautiful imagery: the symbolism of the bright, gentle butterflies, the special bond between parent and child, and the presence of colorful awareness ribbons and words of support throughout. We began learning of the different ways the website’s creator, Kristina Wyatt, was advocating for EB families by creating rich, vivid graphics to spread the word and educate others. She uses attention-getting imagery about epidermolysis bullosa and supports direct efforts to raise funds for patients, families, and clinical research efforts.

Recently, we reached out to Kristina to find out more about what she’s doing and how she was first introduced to the EB community. We will be featuring excerpts from this conversation for the next two weeks.

 

EB Resource (EBR): You are a wife and mother of three, an IT professional, a student, a mommy blogger, and now an EB advocate. That’s a lot on your plate. What is a typical day like for you?

Kristina Wyatt (Kristina): I like to think of my typical day as a structured whirlwind – once it starts, there is no stopping! Actually, there are some big changes for me on the horizon. Originally I devoted 40 hours a week in the office plus countless hours being on-call for technical support (a 24/7 responsibility).  On top of my hectic work schedule that ate up the majority of my day, I attend school online to complete my bachelor’s, which I completed in the hours after my children were tucked into bed. Once my schoolwork was out of the way, I would stay up into the early hours of the morning to devote time to my EB work, and whatever I couldn’t finish the night before, I would work on during my lunch break at work. Wash, rinse, repeat! My husband and I just recently have decided to have me become a stay-at-home mom (for now) and work on my freelance web, graphics, marketing, and branding career. In the meantime, I will be adding one more to the litter: my nephew, whom I will take into my care. I am incredibly excited to give more time not only to my family, but to the cause nearest to my heart as well.

EBR: You work in the IT world, but you also have a talent for web design and graphics. When did you discover an interest in designing graphics and illustration?

Kristina: When I was 14 years old, I was slated with a book report assignment at school where we as students were supposed to "think outside the box" when presenting our book report. It was then that I made my first Geocities website, discussing the intricacies of the book Little Women (or as much as my 14-year-old mind could decipher). I am pretty sure I spent more time perfecting the website than reading the book! From there, my passion for web design grew infinitely, until I was designing a website for anyone who would have one. I now offer web, graphics, marketing, and branding design and development services.

EBR: How did you first learn about epidermolysis bullosa?

Kristina: An article caught my attention years ago that would forever engrave the acronym “E.B.” into my mind. I can’t remember the title or author so much as the content – I will never forget the overwhelming sadness that came over me reading those words, seeing the images of the wounds and bandages … It led me to find online journals such as those on CaringBridge and other resources.

EBR: What was it that inspired you to start the EBAwareness.com website, and how long ago did you launch it?

Kristina: When I first discovered that something so horrific as EB existed, the images would not leave my mind, and I didn’t want them to. Every time I read something new, saw a new picture, etc., I remembered the emotions it triggered and I wanted so desperately to help. So I started talking with friends, family, and co-workers – whenever an opportune moment would arise, I would mention EB and ask if they had ever heard of it. No one ever had, and it broke my heart. But at the time, I was working odd hours, just struggling to support my growing family and barely breaking even, and I felt that there was nothing I could do. How could I contribute if I couldn’t even afford to stock my refrigerator, let alone donate to the cause?

Finally, I came across Courtney Roth’s blog. I couldn’t tell you the mass amount of time I spent immersing myself into her blog. I cried and prayed and laughed with Courtney, then prayed some more. The grace that Courtney carried with her through everything, and the indescribable gift that Tripp was and continues to be, was what opened my eyes. I realized I could do more than open my wallet. Thankfully by then, I was into my career and feeling a bit more successful, so I could fund small things as I sprang into action. I realized that you can only raise so much money from so many people, and the key was to make more people aware. It’s not about the money, either (though we need more of that too!) – the more people that are aware, the more that will care, and caring brings the hope that these families need.

EBR: What types of web and graphic work have you been able to do so far to support EB causes through the site?

Kristina: I have been fortunate enough to be enlisted by individuals, fledgling foundations, and larger foundations, as well for various projects. My work ranges from full website design and development, blog development, branding packages, and marketing materials to include anything that can be used as advertising.  I also do smaller graphics, such as Facebook banners, inspiring images that can be shared across social media, etc.

My favorite works are the Tributes. Either by request or by my own inspiration, I create portraits of EB patients in their honor and as gifts to the parents. I aim to provide these services to EB patients and families for free. Creating personal blogs and social network graphics are options I like to offer to help them gain their own voice and share their stories. I am working to evolve EBAwareness.com into something that centralizes around this – all for the sake of spreading awareness. If any patient or parent of a child with EB would like to contact me about this, they are welcome and encouraged to do so.

EBR: What are your main objectives with the website?  How would you like to see EBAwareness.com get more involved in supporting the EB community in the future?

Kristina: The site started as my endeavor to give more people a voice as well as to offer what little I could to show my support.  It has since evolved into a marketing vessel for EB Awareness, though I knew early on I wanted more for the site than simply just pretty graphics. The future for EBAwareness is going to be focused on bringing together patients and non-patients alike and giving them the ability to unify in their fight for a cure. I have founded an organization, The Butterfly Network, which currently involves a small committee of advocates. EBAwareness.com and The Butterfly Network will be a cohesive advocacy program and community that will be a hub for all to become part of the fight and part of the cure. There is so much that the program and community will offer, and let me tell you – it’s going to be big!

 

Next week, Kristina talks about her collaborative efforts within the EB community and how others can get involved at EBAwareness.com.

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