A Conversation with Miss Walking Tall Sarah Stonier, Part II

Last week, we introduced you to the current Miss Walking Tall 2011 Sarah Stonier, who also recently participated in the Miss Tennessee pageant in preparation for the Miss America scholarship competition. She has been a tremendous advocate to raise EB awareness by embracing the cause as her pageant platform. This week in part two of our recent conversation, she shares what she feels may be the greatest areas of confusion that surround EB and what she hopes to do about it as part of her personal mission going forward.

EB Resource (EBR): What do you feel needs to happen for there to be greater, widespread support for EB patients and their families?

Sarah Stonier (Sarah): As it is with most rare conditions, there needs to be more information before there can be more empathy and support. If society is not aware that such a condition exists, then they can’t promote awareness and support for funding. Social media is a huge way we can inform others about EB, but we also need to use forms of media that break outside the EB community.

EBR: What do you think is a misconception about EB or may be causing confusion about the disease and what can other EB advocates like you do about it?

Sarah: From my limited knowledge, I would say the biggest misconception is that people don’t realize the severity of EB. They hear “skin condition” and immediately assume it’s merely a cosmetic challenge. Other advocates and I need to be bold enough to share the graphic facts, so that people understand the magnitude of EB, and not just stop there but capture that understanding and turn it in to funding for research and support.

EBR: Since the pageant, you mention on your Facebook page that you are making EB awareness a personal ongoing mission. How do you plan on staying involved and supporting the community going forward?

Sarah: This fall I am preparing to hold a 5k to raise money for EB. The first time you ever embark on an endeavor like that, it’s going to be challenging, but once it’s completed, I think it will be wonderful if it becomes an annual event and that’s what I would strive for.

EBR: Throughout your pageant participation and your blog, you make it clear that faith is an important element of your life. How has your faith supported you throughout this past year as you faced new personal tests and focused on special goals?

Sarah: My faith in Jesus Christ is the foundation of my life. Without Him I would not be the woman I am with the heart that I have. I was so thankful to be blessed with the opportunities to be Miss Walking Tall and pursue Miss Tennessee. In pursuing goals, it’s always encouraging to know that despite any outcome there’s a plan for my life, and no matter what happens to be joyful because my hope rests in something eternal. A special passage to me this season was Psalm 116:6-9. It speaks of how good the Lord has been to us, that we may walk before the Lord in the land of the living. I was humbled to walk out on that stage and hoped to be a testimony to the Lord’s faithfulness.

EBR: So what’s next on the horizon for Miss Walking Tall 2011?

Sarah: It’s humbling that so many people are interested and excited for what’s next. Of course I will be organizing the EB event. I have hopes to participate in a Habitat for Humanity project and continually seek out opportunities to serve the world around me. I’m also in the beginning stages of planning a mission venture to Cambodia. The biggest dream I have moving forward is to become a published author, so hopefully one day that goal will also come to fruition. Who knows—maybe I’ll have the opportunity to write a children’s book about EB!

Sources:

Sarah Stonier, Miss Walking Tall 2011, Facebook

A Surrendered Crown, a blog by Sarah Stonier

Related Posts:

A Conversation with Miss Walking Tall Sarah Stonier, Part I

EB Champions, We Salute You!

Social Media for EB Storytelling

A Conversation with Miss Walking Tall Sarah Stonier, Part I

We were thrilled when we first learned about Sarah Stonier and her decision to embrace EB as a personal platform for the Miss Tennessee pageant. As a pediatric healthcare recruiter for a healthcare services organization in Knoxville, Sarah crosses paths daily with children with special needs and their families. As previous winner of Tennessee’s Miss Walking Tall 2011 competition, Sarah found an immediate platform to share what she felt was an important message when she qualified to participate in the state contest, which serves as a preliminary step toward the Miss America scholarship pageant.

Though her formal pageant journey ended at the Miss Tennessee event, Sarah continues to be an outspoken and proactive advocate and fundraiser for EB patients and their families, to raise awareness and research funding for the Epidermolysis Bullosa Medical Research Foundation (EBMRF), through her Facebook page and personal blog. In part 1 of our two-part conversation, we learn about her recent pageant experiences and what led her to take on the mission of raising EB awareness.

EB Resource (EBR): You recently participated in the 2011 Miss Tennessee pageant as a preliminary to the Miss America competition. What did you take away from the whole experience?

Sarah Stonier (Sarah): I was abundantly blessed through this experience. Not only did I walk away with accolades, multiple scholarships and completed goals, I took away a newfound desire for a disciplined lifestyle of nutrition and fitness, a wonderful new community of friends, and a deeper appreciation for the number of people who supported me along the way.

EBR: Prior to that, you took part and won the Miss Walking Tall Scholarship Pageant, and I understand it was your final year of eligibility. What led you to decide to pursue this particular title?

Sarah: Every year I would make my list of "open" pageants, or pageants that are available to girls outside the county of the title that fit within my work schedule. I usually wouldn’t participate in West TN pageants because I truly wanted to be close to the area of my title so I could promote it to the utmost. However, it being my final year of eligibility, I took the western pageants into consideration. I was supposed to compete in a triple-crown pageant the night before but I came down with the flu and had to withdraw. There were only two pageants left. I felt a tiny bit better on Saturday night, and all I could think of was the next Saturday at the very last pageant being called as the first runner-up and in that moment, my dream would be over. So I gathered all the gumption I had and drove to West TN that Sunday to compete in Miss Walking Tall and I won! I absolutely LOVE the history behind my title and how the title and story tie to my own personal testimony.

EBR: Professionally, you oversee a large nursing staff that works closely with special needs children. Can you share with us more about what you do and why you do what you do for a living?

Sarah: What I do for a living is very, very special. I get to be an advocate for children who have a variety of diagnosis, anything from cerebral palsy to shaken baby syndrome. I coordinate nurses to provide home healthcare and enhance the quality of life for these amazing children. It is worlds away from what I thought I would be when I grew up, but I have captured the vision of my company, and I take pride in working to serve others.

EBR: Was it through your work that you first became familiar with epidermolysis bullosa? What is its personal connection to you?

Sarah: It actually was not through my job. One of my very best friends in Knoxville had a niece who was born with EB. I would get prayer emails about little Hailey and decided to research her condition. The information I gleaned is what really informed me about EB, and my interactions with Hailey are what solidified my choice to make EB my personal platform.

EBR: Why did you decide to focus on EB awareness as your pageant platform for both Miss Walking Tall as well as Miss Tennessee?

Sarah: One of the articles I was reading mentioned how painful it was for someone with EB to be hugged. That broke my heart. I love to hug and be hugged. I know how powerful that physical connection is for me to express my love to someone, so reading that information inspired me to embrace the cause of EB.

EBR: What kinds of feedback have you received from the EB community?

Sarah: I have been overwhelmed with gratitude for the feedback I’ve received from the EB community. I didn’t think they would ever know who I was. I definitely made EB my platform, thinking Hailey’s family would of course be the only family who knew about me and why I did it. My Miss Walking Tall page is full of encouragement and thanks from EB families and I was deeply touched by that!

Next week, we’ll continue our conversation as Sarah shares her thoughts about what’s necessary to gain greater attention for EB and steps she is taking on her own personal mission to start a conversation and raise fundraising dollars for research to treat and cure epidermolysis bullosa.

Sources:

Sarah Stonier, Miss Walking Tall 2011, Facebook

A Surrendered Crown, a blog by Sarah Stonier

Related Posts:

A Talk with EB Support Group Leader, Connie Flowers, Part I

A Q&A with EB Friends Creator, Chris Pez Matthai, Part I

A Q&A with DebRA’s Nurse Educator