EB Happenings This Fall

Autumn is almost here, and this season, a variety of events are planned to raise EB awareness and research or resource dollars to support patients and families impacted by the disease. Here are some scheduled events or ongoing campaigns, as well as links where you can get additional information should you wish to get involved or lend your support. If you know of other events planned during the remainder of 2017, please let us know. You can email me at leslie.rader@hollister.com.

  • 7th Annual Night of Discovery (Long Beach, CA) – Indulge in a special evening ‘under the sea’ to benefit EB Research Partnership hosted by Aquarium of the Pacific 7 p.m. to 10 p.m. Saturday, September 23. This year’s theme is “Lighting a Path Towards a Cure,” and will include cocktails, dinner and an auction. For more information and to buy tickets, click here.
     
  • TEAM DEBRA at Bank of America Chicago Marathon (Chicago, IL) – Lace up the sneakers or support the existing crew of participants hitting the pavement in Chicago’s Grant Park on Sunday, October 8. Runners from all 50 states and over 100 countries will be taking part. Runners start at 7:30 a.m., 8 a.m. and 8:35 a.m. TEAM DEBRA proceeds will benefit debra of America. For more information, click here.
     
  • 19th Annual debra of America Benefit (New York City, NY) – Come out for this yearly debra fundraiser being hosted by Guastavino’s on Thursday, October 26. Event runs 6 p.m. to 10 p.m. and will include cocktails, hors d’ oeuvres, a silent auction and a seated dinner. For more information and to buy tickets, click here.
     
  • Debra Inaugural EB at TPC (Duluth, GA) – Tee up for a good cause at the debut of this benefit golf tournament at Sugarloaf Golf Club Monday, November 13. Registration, breakfast and driving range begin at 8 a.m. with shotgun start at 11 a.m. Take part on the links or attend the post-tournament reception. For more information, click here.
     
  • Prevail Activewear EB Fundraiser (Online) – Browse a new line of active wear launched by actor and fitness buff Josh Brolin and wife Kathryn and support EB families in the process as part of this Limited Time Offer. Fifty percent of the proceeds of Prevail Activewear will go directly to St. Jude’s Children’s Research Hospital and the Epidermolysis Bullosa Medical Research Foundation. For a closer look at this new clothing line, click here.
     

Year’s End Celebration

We’re just days away from 2012, and we always love using this time to reflect on the good things the current year brought to us – maybe it was new people, a fresh perspective on a subject or added knowledge or activities that helped us learn and grow in some way or another.

What are you celebrating at year’s end? A new job? A victory for the family? Maybe it’s not an obvious piece of “good news” but more about a new understanding or acceptance of something in your life. Peace of mind and resolution are always meaningful causes to celebrate in our book!

So we want to take this time to say thank you to everybody who in some way has contributed to EB Resource this year– whether it was contributing a personal story or information for one of our blogs, becoming an active part of the Facebook community or re-tweeting our updates on Twitter. Let’s toast the old year as we usher in a new one.

  • More community growth. We watched our EB Resource Facebook community grow yet again from nearly 800 members at the start of the year to just under 1,000! Many of you have introduced what we’re doing to friends, family and co-workers who have since friended us, too, and support the community in their own unique way, and for that, we thank you.
     
  • Steady interaction. It’s been so exciting to be a part of a relevant, ongoing conversation that has shown no signs of slowing down, and one with so many caring people lending their voices. Sometimes we launched the topics and other times, members posed important subjects for discussion. This has been an organic process from the start, and we can’t wait to see new ways we’ll connect with one another during the new year.
     
  • More and more voices in the blog community. Each year, we see a growing number of voices join the blogging movement. This is certainly not a new avenue for expression but one that can be particularly timely and critical in our community, with so little information or discussion available in mainstream media about EB. We won’t begin to take credit for encouraging more bloggers to open up their WordPress and Blogger accounts, but we do feel an itsy-bitsy sense of pride that some of our EB Resource Facebook friends are among those who’ve launched these new blogs. So we hope we’ve at least been influential in your decision and will continue to call on others to speak up if they have something to say.
     
  • Even more fundraisers for EB causes. As great organizations like EBMRF, DebRA, the Butterfly Fund, PUCK and others find opportunities to create larger-scale events and campaigns, we are beginning to see more and more families and communities at a grass roots level launch their own community-based awareness events and fundraisers. This is wonderful news, because it starts at the neighborhood level, helping others become familiar with what EB is, what it looks like, what it means for those impacted and how others can help in basic ways to make a difference. So kudos to those who took the leap and launched their own first annual event this year. Keep us in the loop about your second annual events in 2012 so we can help you spread the word!
     
  • The love Tweets. Thank you again, everybody, for re-tweeting and spreading the word during our recent second annual EB Awareness Tweet-a-thon. Hollister Wound Care was able to donate $2,500 to DebRA of America as a result of those who pitched in, taking the time and care to share messages with their own followers. Just think about how many new people were introduced to the topic for the first time because of your interest and energy. We can’t thank you enough!

As you get the funny-looking hats, party horns and champagne flutes ready for the new year, take the time to reflect on your own personal victories and challenges, and where you’re headed. And we’ll look forward to connecting with you in 2012!

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.

Source:
Family Center, DebRA of America

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

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