Posts belonging to Category 'EB Resource Main'

Planning Your EB Awareness Campaign

For some, planning a fundraiser is simply an endeavor that’s out of reach – maybe you don’t have the time or energy to plan one or you haven’t been able to recruit volunteers to help you as you had hoped. Even a committee of one – you! – can use this time to spread the word about EB to others, through your own EB awareness campaign. Make it your mission this National EB Patient Awareness Week to use your voice, knowledge and maybe even personal experience to educate others about a disease that they most likely never heard of before.

Here are some tips for helping you do that:

· Reach out to local media. Draft a short news brief about the significance of the last week of October to EB families and explain what epidermolysis bullosa is for readers; then send your article off to community publications. Write up a letter to the editor about the need for EB research dollars and national attention and forward it to local metropolitan newspapers. As for local TV, email a reporter who covers events and profiles in the community and tell him or her about EB and suggest a feature on the subject or a profile of a local family to introduce the topic to viewers.

· Educate those with the job of educating others. Suggest to school administrators that you set up an information table outside the cafeteria or the school book store for one day during National EB Patient Awareness Week – perhaps time it along with a bake sale that week or ask if you could host your own bake sale along with your information booth to raise funds for DebRA. This might be a small enough fundraiser that you could still manage yourself while handing out literature, and best of all, it would give others a reason to stop by your table! Put together flyers and have these and other information sheets about EB available for students, teachers and other staff members at school to take with them. Maybe request that you attend that week’s teacher/staff meeting to speak for five minutes at the beginning of the meeting and leave behind information sheets about EB.

· Spread the word in social circles. If you are normally part of a moms’ exercise group or community or hobby group that meets regularly, ask if you could bring in baked goods and refreshments once during that week and address the group about the subject. Use the opportunity to familiarize attendees with the DebRA of America website or whatever other EB organization you support regularly, and urge the group to take on the nonprofit as their benefiting charity over the holidays.

· Use your social media lines of communication. You’ve seen us do it before on our EB Resource Twitter page. In fact, we’re doing it again this year – details coming in next week’s blog! Why not use your existing accounts and relationships on Facebook, Twitter, MySpace, LinkedIn or other social media sites to educate your friends or followers about EB every day of EB Patient Awareness Week? Let people know early in the week what you’ll be doing so there is full disclosure, and don’t be surprised if you have a few followers who trail off or even disconnect because they may have followed you for completely different interaction or subject matter. But for others with whom you are still growing your relationship, it can be a great way to share your story in an educational, non-threatening away. And best of all, the nature of social media encourages others to … pass it on, paste and forward, SHARE. And that’s exactly what you want them to do!

What are some other ways you could launch your own EB awareness campaign just two weeks from now? It shouldn’t take nearly as much planning or involvement on the part of other parties – merely a forum, perhaps a welcome or invitation to share, and your commitment to be honest, accurate and sincere with your appeal for others to learn more. Expect nothing more, but ask for their attention.

And let us know if you are doing an awareness campaign from your backyard. We’d love to hear what you’re planning!

DebRA of America
EB Resource on Twitter

Related Posts:
Doing Our Part: What Can You Share?
Social Media for EB Storytelling
Blogging Your Story: Five Things You Should Know

Gearing Up for Your EB Fundraiser

EB Patient Awareness Week will kick off in less than three weeks. Once again, EB Resource will be launching its annual Tweet-a-Thon to raise funds for DebRA of America. (More info will be coming to you soon about this fun event!)

This time of year is a great opportunity to educate neighbors, colleagues at work, members of your church, local teachers and school staff, your child’s classmates and their families, and others in the community about epidermolysis bullosa – what it is, what it means for patients and their loved ones and what they can do on a daily basis to support these families. Your fundraiser is a chance for you to engage others on a grander scope to get behind efforts to create more support resources for these families and develop better treatments, and ideally, a cure.

So what have you done so far to get your fundraiser underway? Don’t get too nervous but the clock is ticking. There’s still time to get everything in order for a successful fundraiser, but don’t leave out any of these important aspects.

· Community promotion. Meet up with local business owners and ask them to help spread the word about your upcoming event, whether it’s including a flyer in high traffic areas at their establishment or telling customers verbally about the event.

· Vendor support. Appeal to local businesses to provide supplies wherever needed to get added exposure for their business while helping out a worthy cause. You should consider especially reaching out to newer businesses in the area that are still trying to gain footing and awareness in the community. Find out if there are ways they can assist with available food and drink, raffle gift items, silent auction prizes, giveaways, special services available onsite or anything else that can help drive traffic and interest for your event.

· Neighborhood communicators. Reach out directly to those in leadership roles at local schools and community associations, including PTA leaders, school principals, neighborhood association leaders, the mayor’s office, city council members and others. By telling some of the more involved and vocal people in the community about your upcoming event, you’ll have greater odds that folks will be talking about it and spreading the word. Expand this word of mouth by letting others “in the know” do some of that talking for you!

· Volunteer support. Recruit any friends, family and neighbors to help you on the big day. People planning their first fundraisers often underestimate the amount of time, effort and preparation to pull off the big event. The more hands involved, the more you can get done; it’s as simple as that. You also may want to contact local high schools about possibly facilitating community service credit for young students looking to do some volunteering. If they can gain credit for their service and you gain much-needed help to set-up or manage the fundraiser, it could be a win-win!

· Media attention. Invite media outlets of all formats and sizes to share news with readers beforehand, take part as a media sponsor, or simply attend and report the event. Be sure to invite more than local affiliates of major TV networks and metropolitan newspapers. You will benefit by including smaller, more targeted outlets, such as neighborhood news publications and community radio stations that are always looking for events and fundraisers to promote in the area.

If you are in the midst of planning your fundraiser, good luck to you. And don’t forget to check out these additional sources for assistance. DebRA offers some valuable advice about planning a local DebRA event. And we featured a helpful checklist last year that it is just as pertinent today. Best wishes for a successful event … and don’t forget to send us the details for your upcoming fundraiser so we can spread the word here in our own community. Email all of the event information. Thanks!

Plan a Local DeBRa Event, DebRA of America
Your EB Awareness Week Checklist, EB Resource

Related Posts:
Advice for Planning Your Own EB Fundraiser Walk, Part I
Advice for Planning Your Own EB Fundraiser Walk, Part II
Planning Your EB Awareness Week Fundraiser

Picking a Wound Dressing: TRIACT Technology

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.

There are several properties to consider when choosing a wound dressing, but it can be difficult sometimes to tell them apart. When selecting, it can be helpful to keep the following four questions in mind:

· Is the dressing easy to use?
· Is it virtually pain-free to remove?
· Does the dressing maintain a moist wound healing environment?
· Does it reduce trauma to delicate tissue?

Hollister Wound Care’s line of wound dressing products features TRIACT technology, while many other dressings on the market use silicone technology. TRIACT technology is a scientific formulation used in select RESTORE wound care dressings. These advanced dressings are designed to form an ideal moist wound healing environment. RESTORE contact layer dressings can be used for the treatment of many chronic and acute wounds, including wounds associated with EB.

TRIACT and TRIACT Advanced technology help provide the following benefits:

  • Moist Wound Interface
    The lipido-colloid matrix contains CMC particles that form a gel in the presence of exudate, providing a moist healing interface between the wound and the dressing.
  • Potential to Minimize Pain
    Upon contact with exudate, a protective gel forms, which may minimize patient pain during dressing changes.
  • Reduced Trauma to Delicate Tissue
    The lipido-colloid formulation helps prevent the dressing from adhering to delicate tissue, minimizing trauma upon removal or disruption of the healing process.
  • Effectiveness
    The 100% non-occlusive fine polyester mesh helps avoid maceration and allows exudate to pass through into outer absorbent layers without sticking.

· Comfort
Dressings do not adhere to wounds, therefore minimizing pain at dressing changes. In a comprehensive survey by S. Meaume, 95% of patients with acute wounds said RESTORE Contact Layer dressings with TRIACT technology were less painful than other dressings.

  • Versatility
    Flexible filaments allow the dressing to conform to a variety of wound types and body contours. Plus, dressings with TRIACT technology are non-greasy and easy to apply and remove.

Hollister Wound Care dressings made with TRIACT and TRIACT Advanced technology create a protective gel and may help minimize pain during dressing changes, prevent dressing adherence, and provide a moist healing interface between the wound and the dressing.

One popular type of dressing that is sometimes used instead of TRIACT and TRIACT Advanced technology is silicone-based dressings. These provide a non-adhering foundation, which can minimize trauma for some to the wound bed upon removal. However, unlike dressings with TRIACT technology, silicone in a dressing is inert, meaning it does not change properties and cannot use the moisture from the wound bed to help provide a moist wound healing environment. Silicone dressings float over the wound bed, without the same ability to provide a moist healing interface as TRIACT and TRIACT Advanced technology does.

Before making your selection, be certain to gather all of the information you can about the dressing you choose before putting them to use. It is important to educate yourself and your family and get your questions answered early on in the process.

Hollister Wound Care

Meaume, S., et al, “Use of a new, flexible lipidocolloid dressing on acute wounds and chronic wounds: results of a clinical study;” J of Wound Care, 20(4), April 2010, 180-185.

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EB & Educating the Rest of the Family

When many of us first introduce the concept of epidermolysis bullosa to friends, neighbors and our extended family, they may not be certain how to accept this information or truly understand how this new unfamiliar abbreviation “EB” is going to impact the family. Sometimes uncomfortable, awkward conversations may be necessary to educate those around us so we may build a stronger, more complete and informed support network that our families will need. We offer a few ways to begin doing this.

  • Invite a good friend or family member to accompany you for a doctor’s appointment.
    Allow those closest to you to join you during a care consultation with the doctor or nurse to get a clearer picture of the challenges your family faces and help identify places in the care process where they may possibly offer assistance or resources.
  • Urge family supporters to tune in to other voices about EB.
    Suggest that close friends and family members connect with others on social media networks and blogs to learn about the disease, the latest research and events to benefit research and awareness efforts.
  • Accept assistance wherever offered and make suggestions when friends and family members express an interest to help.
    Open yourself to others’ lending their support in whatever ways they know how. Sometimes it can seem like a vulnerable situation but welcome others’ willingness to help out in the care process or other household tasks or obligations. Often you can guide these helpers to provide specific types of support that would be most practical to your family’s circumstances. Friends offering support are looking to you for guidance on how they can be the most helpful: don’t be afraid to be assertive enough to tell them or to accept their thoughtful offer.
  • Collaborate on a community fundraiser or awareness event.
    Encourage others in your inner circle to get involved with the cause to raise funds for EB research or direct EB patient support, or to join a campaign to draw attention to the subject. By being involved in an effort to educate others, your friends and family will want to learn all that they can to become a valuable resource who can share information with others.
  • Direct them to organizations with resources specifically designed to educate and support patients, families and their communities.
    Groups like DebRA of America, Pioneering Unique Cures for Kids (PUCK), United Survivors with EB, and Epidermolysis Bullosa Medical Research Foundation (EBMRF) serve various roles in the EB community and may offer different pieces of information or opportunities for loved ones to arm themselves with greater knowledge about the disease, current research efforts and patient services available. You also may want to point them to our recent list of 100 helpful links for EB families. It’s by no means a complete list of articles and resources available, but it can be a practical starting point to locate additional information.

For those who have already experienced this, what were some different strategies you used to educate close friends and families about EB and make them an invaluable part of your support network? We’d love to hear from other families.

Family Center, DebRA of America

Related Posts:
Doing Our Part: What Can You Share?
100 Links for EB Families
Support Networks vs. Support Groups

Resources for Caregivers

Being a caregiver can be a stressful and demanding job, yet to those with EB, the role is truly a critical lifeline. We’ve gathered a list of some online resources that may be worth checking out. These sites can offer helpful information, links to organizations that specifically provide support to caregivers, and practical tips about managing the care of others, stress management and self-care, as well as other relevant topics.

*The following links are provided as a courtesy to the EB Resource community for informational purposes only. The suggestions referenced are not intended to be a substitute for the advice of a medical care or mental health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your personal health care provider.

Do you know of any additional resources to suggest to any caregivers who may be reading? If so, please comment here at this blog or at our EB Resource Facebook community and thanks in advance.

The Rosalynn Carter Institute for Caregiving
The Family Caregiver Alliance
Family Caregiving 101
“Taking Care of You: Support for Caregivers,”
The National Family Caregivers Association
Caring Today Magazine
Today’s Caregiver Magazine
Caregiving in America Magazine

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100 Links for EB Families
Support Networks vs. Support Groups
Becoming a Proactive Caregiver

Upcoming EB Events & Fundraisers

With EB Patient Awareness Week (October 25–October 31) less than two months away, we want to know: have you gotten plans in place to launch your own neighborhood, community or school fundraiser or awareness event? We’ve heard about a handful of fundraisers and events going on around the country and wanted to let you know about them.

  • 4th Annual Midwest Picnic for EB Families (Palatine, IL)
    Families in the north central part of the U.S. get an opportunity to meet up and take part in fun family activities at this lunch event taking place Saturday, Sept. 10 from noon to 4 p.m. at the Falcon Park Recreation Center, 2195 N. Hicks Rd. in Palatine. Lunch will be provided; families are encouraged to bring desserts to share. Visiting families also will get to meet event guest Dr. Amy Paller and physicians from her team at Children’s Memorial Hospital (Chicago). Click here for this public event’s Facebook page for more info.
  • Kendall’s 2nd Annual Walk/Run (New Albany, IN)
    Those looking to support EB patients and their families can take part in this fundraiser in honor of Kendall Lanham, a 13-year-old with RDEB, being held Saturday, Sept. 17 from 8-11 a.m. at Sam Peden Community Park, 3037 Grant Line Rd. in New Albany. Proceeds from the walk will go to the Cincinnati Children’s EB Family Crisis Fund to help assist patients and their families. For additional event information, go to its Facebook event page here.
  • Mats Wilander Celebrity Tennis/Golf Classic (Rye, NY)
    Next month, tennis legend Mats Wilander and his son Erik will host their 13th annual celebrity sports event Monday, Oct. 17 at Westchester Country Club in Rye. The 2011 fundraiser will begin with a morning tennis clinic run by Wilander, John McEnroe and other tennis professionals. Afterwards, guests will be able to enjoy 18 holes of golf with TV, movie and sports celebrities. For more info or to register, click here for additional details. Proceeds benefit DebRA of America.
  • A Night of Discovery and Healing EB (San Jose, CA)
    A California couple are hosting an EB fundraiser/awareness event on Friday, Oct. 21 from 6-10 p.m. at the Children’s Discovery Museum, 180 Woz Way in San Jose. All proceeds will benefit Stanford University’s EB research efforts. Event will include light appetizers, live music and a silent auction. For additional info or to become an event sponsor, visit the event’s Facebook page or contact Heather Fullmer at 310-722-9174.

  • First Annual Aubrey’s Butterfly 5K Run (Dimondale, MI)
    Supporters are encouraged to sign up to participate in this new fall fundraiser race making its inaugural run Saturday, Oct. 22 at Dimondale Elementary School, 330 Walnut St. The event pays tribute to the late Aubrey Joy Oberlin. Registration starts at 8:30 a.m. with the 5K walk/run to begin at 10 a.m. $20 adults and $10 kids before Sept. 23. Proceeds from the race will benefit DebRA. To register or learn more about volunteer and sponsorship opportunities, visit

  • Action for Jackson 2011 (New York City, NY)
    The Jackson Gabriel Silver Foundation has posted on their website news of this second annual event being held Wednesday, Oct. 26 at Doubles, a private club at the Sherry-Netherland Hotel, 781 Fifth Ave. in New York City. Event begins at 6:30 p.m. and will include an open bar, hors d’oeuvres and auction. Tickets cost $150 each with proceeds raised going toward EB research at both Stanford University and the University of Minnesota. To request being added to the mailing list to receive an invitation, email Jamie Silver at

· Sonoma Butterfly Ball (Sonoma, CA)
The Butterfly Fund has scheduled its third annual event for Saturday, Dec. 3. Details of the private fundraiser’s time and location will be made available to attendees at this invitation-only event. To request being added to this year’s guest list, click here to complete the group’s contact form at their website.

Are there EB Patient Awareness Week events taking place in your community this October or other events planned for later this year? If you know of any other events, please provide details here at the blog and on Facebook. We encourage you to share the news with the whole EB Resource community. Thanks!

Debra of America
Aubrey’s Butterfly 5K Run
Jackson Gabriel Silver Foundation
The Butterfly Fund

Related Posts:
100 Links for EB Families
Join the EB Resource Conversation
Plan Now for EB Patient Awareness Week 2011

Doing Our Part: What Can You Share?

*The following suggestions are provided as a courtesy to the EB Resource community for informational purposes only. The suggestions referenced are not intended to be a substitute for the advice of a medical care or mental health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your personal health care provider.

As people living with EB every day, whether as family members or patients ourselves, we often come into contact with others along the journey. Some can share similar experiences, and for others the subject of epidermolysis bullosa is new and confusing. How can we take our own EB experience and use it to offer support or knowledge to other EB families, especially those just beginning to gather information and resources to understand this new way of life?

  • Share supplies no longer used or those in excess. For parents who are not planning to add to their family and who may have originally purchased specific accessories or equipment to manage the care process for their baby with EB, find a family who might be able to use these items.
  • Volunteer to provide sitting support. Of course, this can only work in those instances where both families live in the same general vicinity but recall your own early weeks and months of caring for your baby. Wasn’t it challenging not having babysitting support, if only to allow time for an occasional quiet dinner with each other or a bike ride or run to recharge? Share the gift of support with someone in shoes you once wore and may still don.
  • Get involved in online group chats and forums. Joining communities such as EB Resource, EB Friends and others can provide a wonderful outlet to share information and answers to each other’s questions and provide support and insight as someone who has faced these same early EB challenges before.
  • Start a blog. This option may not be for everyone, but it doesn’t require you to be an ace reporter or best-selling novelist: simply someone willing to open up and share personal experiences, offer tips gained along the way and practical strategies learned by making mistakes and trying just about everything to help your loved ones. If by blogging about your own experiences, you can save another family from making the same mistakes or spending a lot of money to find the “right” tool that works, wouldn’t it be worth the time to share your story? Blogging can be a great way to connect with others and share thoughts on wound supplies, EB-friendly clothing brands and socializing strategies as families set out to interact more with others.
  • Reach out directly to new EB families. Once you learn of another new EB family in your community or perhaps a neighboring city or state, take the time and make that connection. Reach out to introduce yourself and offer to be there as a resource should they ever have a question about something that you may have experienced early on in the care process. While you can never and should not substitute for the guidance of a licensed medical professional, sometimes just having another person listen to you and offer support as a fellow parent and caregiver can be helpful.

When you first learned about EB, did anyone reach out directly to you to lend moral support or offer formal or informal educational resources about the disease? Think about your situation today: what can you do to support others?

EB Resource Facebook Community

Related Posts:
100 Links for EB Families
Support Networks vs. Support Groups
Social Media for EB Storytelling

Finding Ways to Support EB Families

As many of you know, in addition to supporting the New Family Advocacy Program for DebRA of America and coordinating the online EB Resource community, I work for Hollister Wound Care. In my role as Coordinator of EB Affairs, I frequently interact with EB patients and their families, healthcare providers and caregivers, developing programs and channels for delivering useful information to each of them, and often find many of the same kinds of questions and needs arise during these conversations.

I’m really pleased to see that Hollister Wound Care truly does what it can to look out for EB families, both through advancements in its TRIACT technology and their commitment to being a vocal advocate and source of support in the EB community. So I am especially excited to share news about a new resource available for the families of newly diagnosed EB patients.

Hollister Wound Care already has several helpful tools that it’s developed to help educate and guide those in the medical community as well as patients, their families and their communities, including a Healthcare Provider EB Resource Kit, EB Resource brochures, a Wound Dressing Application and Selection Guide and a practical cut-out poster demonstrating the various ways to cut dressings for different body parts. I’ve personally gotten the opportunity to help develop a brand new tool, a Patient EB Resource Kit that is now available.

This new patient-oriented kit is designed to give families an “EB starter kit” and will include bandage scissors, a handy tip card, product samples, EB brochures, and more. I’m so excited that Hollister Wound Care has entrusted me to address the concerns and needs that are communicated to me on a regular basis by patients and their families by coordinating the assembly of this patient resource.

This latest addition is yet another example of Hollister Wound Care doing what it can to put good information and resources into the right hands. Similarly, the company has been a key player in educating others about the disease through such innovative campaigns as a sponsored 90-second public service announcement that began airing last summer on Discovery Health and a unique 24-hour Twitter fundraiser that took place during last year’s National EB Awareness Week. And as always, Hollister Wound Care continues to be an active sponsor for DebRA of America and a regular contributor to the conversation at medical and scientific conferences, such as the Clinical Symposium on Advances in Wound and Skin Care.

If you have any questions or interest in any of the current support resources available through Hollister Wound Care or the new Patient EB Resource Kit, please feel free to contact me by phone at 1-888-EBAID4U or by email at


Hollister Wound Care, EB Resources

DebRA of America

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Free EB Information Resources

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!


Sarah Stonier, Miss Walking Tall 2011, Facebook

A Surrendered Crown, a blog by Sarah Stonier

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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.


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