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.

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.

EB Champions Worth a Cheer

Nothing pleases us more than to discover new voices out there trying to raise awareness or support for those directly impacted by epidermolysis bullosa. We call them our EB Champions, and we’ve got another trio to recognize for the work they’re doing to help others become more familiar with the disease and introduce them to organizations raising funds for EB research. In addition, some of these champs have figured out a way to use their talents to directly support EB families, and we think that’s worth celebrating. Kudos to all of them for what they are doing.

  • Kristina Wyatt and EBAwareness.com
    At her website EBawareness.com (www.ebawareness.com), the self-described “EB ambassador” describes her life as simple, fulfilling and busy, and regards her children as her greatest achievements, but we think what she’s doing to help the EB community is terrific. This IT professional by day who claims graphic design and web development are just hobbies has launched not only a website but a Facebook page to publicize fundraisers and awareness events, as well as promote special campaigns, including a successful EB Awareness Bracelet Campaign. Wyatt is a perfect example of someone investing in a cause she feels passionate about and using her skills to educate and network with others who are on a similar mission.
  • Christie Zink and This Little Light
    When photographer and founder of Elan Images Photography Christie Zink met up with Tripp Roth this past year, she was inspired by his spirit which she captured so beautifully in pictures with his mother Courtney. Wanting to make a difference in the lives of families like the Roths to provide long-lasting memories through her unique form of visual storytelling, she partnered with a Minnesota charity to create the project This Little Light to provide custom portrait services to these families. Though Tripp has since passed, she says on her blog that his spirit continues to shine and inspire her to raise EB awareness. And we think that she has a real gift for shining the spotlight on the beauty, love and spirit of those she photographs, and we encourage those in the community to share information about this great project with EB families you may know. What a wonderful gift …
  • The Scanlon Family
    Recently, Liz and Gary Scanlon opened their doors to documentary filmmakers to share their lives as parents of now 4-year-old Claudia, who was diagnosed at birth with EB. DEBRA Ireland has since uploaded the documentary, Touched by a Butterfly, in two parts on YouTube.com. (Click here for part two.) Viewers not only get an honest portrayal of what living with EB looks like but also see firsthand how friends, family members and schools can support a family, as those in the lives of the Scanlons work together to support Claudia and her parents. We are so thankful for families like the Scanlons for their willingness to share a thoughtful and sensitive depiction of life with EB. It’s definitely worth checking out and sharing with others.


Community Contributions

Recently, we blogged about the various gifts people bring to community forums and the resulting roles that those of us participating in these online communities take on – such as a cheerleader, teacher, igniter or fact-checker. However, besides lending your voice to the cause (literally) or contributing in more obvious ways, such as through donating money or supplies or hosting an event to collect these types of resources, there are many other ways that you can contribute to the EB community. Some may be more obvious than others, but we hope that perhaps this starting list happens to inspire you or people you know who have indicated they want to do more.

  • Marketing and publicity
    Do you know anyone who is a professional marketer – perhaps in public relations, advertising or other marketing realms? These individuals often have very creative and strategic minds that could be beneficial to anyone trying to garner interest in a fundraising campaign or plan an event. Don’t be reluctant to reach out to someone you know with these kinds of skills. And if you are someone in that career field and interested in helping out EB families you know, consider tossing your promotional hat into the mix to offer complimentary services or advice.
  • Writing and design
    Are you handy with words or a talented web designer? Why not offer your support to those who may wish to write a regular blog, pen a book or set up a new blog page? We were overjoyed to learn about Kristina Wyatt, a young wife and mother who launched the EB Awareness program through which she offers blog page design services to those in the EB community wishing to launch a blog page. She also provides assistance to those who may need other EB-themed marketing materials for fundraising and awareness campaigns. Let that inspire any of our freelance writers and artists out there to devise what they can do!
  • Cooking and baking
    Are you a whiz in the kitchen? Perhaps there would be an opportunity to develop a cookbook and donate some or all proceeds to your favorite organization. If there are local events being held, such as an awareness walk, auction or gala of some kind, can you offer your services to pitch in baked goods or side dishes? Or maybe you can donate your culinary services for a special auction prize package?
  • Art or photography
    If you’re particularly skilled in drawing or painting, what if you were to offer your services to provide free sketches or paintings to EB families? And photographers, there are plenty of services you could extend to those families who may feel like a traditional photography studio will not be sensitive to their special needs and circumstances when setting up a group photo shoot. How can you alleviate this concern and share both your skills and compassion behind the lens?
  • Financial consulting and accounting
    For many EB patients and their families, the monthly cost of the disease can take a huge toll on morale and any potential savings. If you are a licensed financial consultant, perhaps you could offer a free consultation or two to discuss strategies for addressing financial challenges. If you are a bookkeeper or certified public accountant, consider offering your services to put together a debt or medical bill repayment plan or provide assistance to get debts reduced with lenders or medical institutions.

Have you been thinking about yourself or someone else you know who has expressed an interest in getting more involved to help out EBMRF, DebRA, the Jackson Gabriel Silver Foundation or one of the other many relevant and valuable EB-focused organizations? What can any of you do to lend a hand in your own unique way? We want to hear other ideas from you, as well!