Lucky to Have These EB Voices

When we first started this blog back in late 2009, we had a small community. So many people still had not heard of epidermolysis bullosa at that time. It’s been a mission for many of us to change that, and in four-plus years, it has. There are definitely more families, more communities and more researchers involved in spreading the word about EB. Here are just three of some EB voices who have been very influential in educating others about EB.

  • Andrew and Shawn Ripps Tavani. The Tavani family has been a consistent supporter of EB families through its various fundraisers for DebRA. Since daughter Ellie was born with EB in 2006, the Tavanis have been reaching out to their community and beyond to raise funds for an organization that helped them through its various support programs and continues to do so. The Tavanis coordinate fundraisers through Butterfly Wishes for Ellie including an EB Awareness Walk and their main annual silent auction fundraiser to be held this year on Thursday, May 22 in Atlanta. Click here for more details.
  • Geri Kelly, RN. Just as the Tavanis are educating communities about EB through their events, DebRA’s on-staff Nurse Educator Geri Kelly, RN, is educating anyone who may come into contact with an EB patient, to ensure they have the necessary information about the disease and to serve as a valuable resource for questions about care and needed supplies, particularly with those unfamiliar with the disease or what care may be required. As Nurse Educator, Kelly plays a vital role as a point of contact for parents of newly diagnosed children with EB, patients still trying to fully understand their condition, and healthcare professionals and caregivers managing care for EB patients. Click here to read more about her role at DebRA.
  • Alfred T. Lane MD. As a professor and Chair of Dermatology at Lucile Packard Children’s Hospital at Stanford University, Dr. Alfred Lane has been one of a small group of research leaders in the study of epidermolysis bullosa. He has become a key voice in the discussion of EB, continuing to educate others in healthcare, the scientific community and the general public about the disease and its impact. Specializing in pediatric dermatology, he continues to lead clinical trials through the University and has participated in videotaped interviews on the subject of EB that have since been made available on sites like YouTube for online learning and distribution of information. Click here to view one such interview.

EB & Rare Disease Day 2014

This month marks Rare Disease Day, an annual day which observes the prevalence of rare diseases and their impact on the people living with them. It was started six years ago by EURORDIS and the Council of National Alliances, and its recognition has grown beyond being a European and become a world occasion with more than 1,000 events held since its launch.

 

The focus behind this one day is in line with what EB patients, families and their advocates set out to do every day – educate people; inspire others to become involved in advocacy, fundraising and research; and instill a better understanding of the kinds of challenges and needs facing the rare disease community.

 

Rare Disease Day has also been embraced by those in highly influential roles to garner more attention for the topic, including politicians and entertainers. Last year, over 70 countries from around the globe took part in what became the largest Rare Disease Day ever. On its own website, the coordinators of the event state their ultimate goal is for the World Health Organization to recognize the last day of February each year as one of its official days to help build international awareness of rare diseases.

 

Here in the EB community, it can be a perfect opportunity for families impacted by EB to speak up. Families could take the occasion to contact their elected representatives about any upcoming or current bills that could impact insurance coverage or funding that might benefit those afflicted with rare diseases.

 

So what other things could you do on a smaller scale to promote Rare Disease Day in your own community? Share information about the international event with your child’s school to explore opportunities to promote it there. Contact local newspapers and television channels. Reach out to any civic or social groups in the area to encourage them to host their own awareness event. Let your company’s HR department know about the annual event and inquire about any opportunities to promote there. Take to your social media channels like Twitter, Facebook, Google+ and LinkedIn and spread the word!

 

To read up about Rare Disease Day 2014, be sure to visit the official website at www.rarediseaseday.org.

Upcoming EB Events

We’re not even two weeks into the new year and already we’re raring to go to promote any future EB awareness events or fundraisers that we’ve learned about. The following events are currently listed on the DebRA website, where additional information can be found on either the local events page or DebRA-hosted events page. Proceeds from each of these events will go toward DebRA’s various programs and services to support EB families as well as research for treatments and a cure.

If you know of any other events taking place during the first half of 2014 to benefit any EB-focused organization, EB support program or individual or family directly impacted by EB, please let us know. You can email leslie.rader@hollisterwoundcare.com or leave a comment on the blog or at Facebook or Twitter. And we’ll be sure to help spread the word, too!

  • “TEAM DEBRA” at the Florida Disney Half Marathon (Orlando, FL)
    This year, there will be the debut of a TEAM DebRA taking part in the event held Saturday, January 11 at Walt Disney World Epcot Center.
  • Cure 4 Cole 2 (Jacksonville Beach, FL)
    This two-day musical event takes place Saturday, January 25 and Sunday, January 26 at the Landshark Café, 1728 3rd St. N. This second annual event features performances from a dozen bands, including Celinda Pink and The Music Factory and The Drifters, and also includes an auction of donated musical instruments.
     
  • 3rd Annual Rafi’s Run Celebrating Rafi Kopelan (New York, NY)
    This popular DebRA of America fundraiser is scheduled for Sunday, March. 9 at 10 a.m. in Riverside Park, 103rd St. Additional details about registration and other happenings at the benefit will be posted soon.
     
  • “TEAM DEBRA” at the NYC Half Marathon (New York, NY)
    Supporters can inquire about participating, sponsoring or coming out to volunteer or cheer on those taking part in this unique 13.1 mile trek through the Big Apple on Sunday, March 16.
     
  • “TEAM DEBRA” at the 16th Annual Flying Pig Marathon (Cincinnati, OH)
    This race, scheduled for Saturday, May 3 and Sunday, May 4, is a qualifying race for the Boston Marathon and offers over 10 events including the marathon, half-marathon, 10K, 5K, 4-person relay, kids’ events and more.

Reflections on 2013

 

Whenever a year ends, we might feel compelled to look back on it and reflect on what happened – the victories, lessons learned and other memorable occasions. For us, 2013 was a pivotal year for the EB community and also for EB Resource, too.

 

We saw researchers continue pursuing research findings for a variety of EB-focused clinical trials already in progress. Organizations like DebRA of America, EBMRF and Jackson Gabriel Silver Foundation continued to spear efforts to raise awareness, funding for EB clinical research and support for the EB community. Planning for the Patient Care Conference got underway as details of next year’s event, July 30-August 2 in Nashville, Tenn., were announced.

 

In 2013, I moved from a member role on the Board of Trustees at DebRA of America to that Board’s President. The greater role and involvement has been a lot of work but exciting to be part of such a forward-thinking organization and I’m honored to be working alongside the other Board members and DebRA’s executive director Brett Kopelan.

 

Unfortunately, every year of triumphs and celebrations brings some sadness, too, and each time we would hear of another member of the EB community passing, we felt a sense of personal loss, which also brought many of us closer together to continue to fight for greater awareness for the disease.

 

What will 2014 bring? It’s hard to say for certain but I know as we all go forward, we’ll find new avenues for reaching out to others to educate them about this little-known disease and we’ll find other ways that we can be supportive of each other using the knowledge and resources we have and new ones that we collaborate on or create altogether.

 

We wish all of you a bright and beautiful new year, from our family to yours.

 

These Are a Few of My Favorite Posts

We’ve been swept up in all of the sights and sounds of the holidays – the Christmas songs, movies and old animated TV specials that get re-broadcast every year. And this year we had an added treat – we could watch the Julie Andrews original of The Sound of Music or the new live TV version starring Carrie Underwood. As we were humming along to one of the classic tale’s signature tunes “My Favorite Things,” we arrived at the idea behind this week’s blog: a recap of some of our favorite blog posts from the year.

 

 

So here’s a second chance to read them, in case you missed it.

A Resolution to Be Heard

Have you set your resolutions for the New Year? Each year, many of us draft that all-important list, crossing our fingers that we’ll tackle those bad habits or conquer those important goals as we make it a part of our annual mission for the new year. Well, we’d like to suggest one to add to your list. It’s certainly on ours here at EB Resource and Hollister Wound Care.

Make yourself heard about EB in 2014…now more than ever.

Whether you’ve been a steady voice in the community for many years, raising awareness or research dollars or if you’ve never shared a thing with others about this little-known disease, the New Year marks a new opportunity to do so. We urge anyone reading this to consider adding EB advocacy to your list of goals. And if you’ve been doing that, a very big thank you and we hope that you’ll continue to be an active part of this community. Ways to do this include speaking up where you can about EB, taking part in awareness or fundraising activities and showing your support for those who are participating in EB events.

For many of us, EB advocacy has become a way of life, and that’s typically the case for anyone diagnosed with EB, parents of a child who is diagnosed or invaluable friends and loved ones within that inner circle supporting an EB family. But no matter how much any of us do, it always feels like we can do more, doesn’t it? It always feels like there’s one more family we can reach out to, one more call we can make, and one more tweet we can send.

As many prepare to settle in for holidays that bring family and friends together, sometimes from great distances, we want to encourage you to take this time to be thankful for those friends and family and look ahead to 2014 as a year for possibilities, as a year for being proactive, for achieving whatever it is you want to accomplish. We simply urge you to add to that list a broader, more passionate role for raising awareness about EB which includes educating others and encouraging them to make a difference in their own way.

EB-Friendly Holiday Shopping Tips

*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.

 

The holidays are often a time when co-workers, friends and family look to lavish loved ones with special tokens of their affection, presents to offer something fun, practical or meaningful. For EB families, however, there are important guidelines that gift-buyers should probably be aware of before purchasing a gift for your little one at the holidays or for a birthday. Consider this blog a useful link you can share with others to minimize any awkwardness but still pass along some important and timely information.

When asked for gift ideas for your child with EB, don’t be reluctant to share tips like these in order to ensure your child’s safety and comfort and look to your fellow members in the EB community for online vendors and stores in the marketplace that may carry EB-friendly brands, too. For those of us who live in the EB universe, some of these tips may seem like common sense but to someone who doesn’t experience day-to-day EB care, these can be invaluable pointers that they likely would not think of on their own.

 

Clothing

  • When purchasing apparel for someone with EB, it’s best to avoid any scratchy snaps, buttons or fasteners, such as zippers or binding drawstrings, because these can irritate delicate skin.
     
  • As for fabrics, look for plush, soft materials, such as cotton, velvet and velour and avoid hard, textured or itchy fabrics like denim, corduroy or some wool pieces. An irritating fabric can lead to the person feeling compelled to scratch or rub their skin which may puncture fragile skin layers and create or prolong open wounds.
     
  • Also, be sure to purchase either loosely-fitting clothing (as long as it won’t brush and irritate skin when it moves) or apparel that is made to fit properly and not too tight, keeping in mind the added thickness that bandaging can contribute. Fabric that has to stretch across skin can also add too much pressure to sensitive areas which may already have blisters or other lacerations.

 

Toys/Games

  • Depending on the age of the child, use caution when selecting toys with pointy or rough edges that could slip in delicate hands. Wherever possible, go with softer, vinyl or plush toys with smooth edges or cushioning.
     
  • Avoid games that encourage other contestants to touch, poke or press against other players, such as Twister.
     
  • Use caution when purchasing any cooking-related toys that might encourage kids to create or bake food items that can be ingested as these may or may not agree with your child’s digestion or throat if they suffer from painful swallowing, often experienced by those with EB.

Sounds of the Season in Our Community

 

What sounds brighten up your holidays? For us, it’s any number of things – the sound of children laughing or that sudden excited hush that overtakes little ones as they unwrap a gift or lose themselves in the joy and discovery of trying out a new toy or game they’ve just received.

 

We also love hearing the harmony of voices coming together to work toward the greater good of a common cause. Some collaborative efforts may develop organically when two like-minded individuals or organizations find they share the same vision, excitement and desire to make something happen; and yet other partnerships can result completely by accident once different parties realize the power of two versus one and that they can better serve their beneficiaries teaming up and pooling resources.

 

Think about your own circle of close friends and family and who falls within that circle, and then extend beyond that tight-knit group and consider the next circle – your co-workers, your neighbors, your children’s classmates and their families – and then go outward one more circle to those you may have met through EB Resource or another EB-focused community or nonprofit, quickly learning that you shared a deep understanding of what day-to-day life is like when facing EB. As you picture this great big series of circles within other circles, consider this question: how can you bring some of those voices, some of those completely separate circles, together in a very real, natural and beneficial way for those living with EB, because there is one very important factor the people who comprise these circles all have in common… you.

 

So at this time of year when we’re jingling bells, spinning dreidels, and many of us are scrambling for gift ideas as well as ways to give back or support others at the holidays in some way, take a few moments to consider the sounds of the season which chime about togetherness, cooperation and kindness, and listen more closely to the voices that make up your world, your various communities and circles, and the messages they share on a daily basis. This season can be the perfect time to introduce ourselves as we prepare and set our minds toward a bright, positive new year.

Grateful for These EB Voices, Inspiring for the New Year

This is the time of year when many of us come up with our list of goals for next year – new things we will try and old things we will fix or eliminate altogether in our ongoing effort to improve ourselves. They’re called resolutions but sometimes that word can add pressure to an already difficult mountain to climb.

We thought this month, we’d combine our mission to form new resolutions with our affection for the work that so many wonderful people are doing in the EB community to make a difference. We call them EB voices and throughout the year, commend a group of people for speaking up for the community. This time, we not only thank them for drawing greater attention to what EB is all about, but we also give them kudos for providing another sort of inspiration to those of us looking to making a difference in ourselves, too.

Caroline Provost

For those who are looking to wake up every day a little bit more positive and focus more energy on being a happier person, there’s no greater example than Caroline Provost of Palatine, Illinois. This delightful and upbeat ‘butterfly child’ recently shared her own story with a local newspaper, and though only eight years old, she shares with sincerity and candor about life with EB yet maintained her bubbly and charismatic personality throughout, sharing a lesson that many of us could heed and employ ourselves. Here is the recent story she appeared in so you can meet Caroline for yourself.

Dr. Jim Sears

So often we may tell ourselves that we should take the time to learn more about subjects that would be meaningful for us to know but for which we have little knowledge. The New Year is the perfect time to set a goal to invest more in educating ourselves. We recently shared a link to a feature on the syndicated television show The Doctors in which a licensed pediatrician Dr. Jim Sears acknowledged that while he knew of epidermolysis bullosa, he had never really been exposed to what this truly looked like or meant for a patient diagnosed with it. So he recognized an area for which he needed further education and reached out to a young man, 11-year-old John Hudson Dilgen, to meet him and share with him about his day-to-day life. The television piece is poignant and their connection immediate, as you watch and recognize the doctor’s appreciation and both sadness and shock at what he’s witnessing as part of the boy’s everyday routine. Kudos to Dr. Dilgen to admitting where he needed additional knowledge and being kind enough to share his journey with the television viewing audience. Here is that story featured on The Doctors.

Lynette Argir

Like many of us, Lynette Argir had a goal in mind, but unlike many of us, her commitment outran any doubts she had of tackling them. This past jogger from Chisholm, Minnesota thought she would never run another race again, having gone so far as to compete in a half-marathon several years earlier. But when she learned that she could raise money and awareness for EB families and specifically DebRA of America by taking part in the NYC Marathon in early November, she decided that it was time to start running again. She began training for her first ever marathon in May. She could have let the limited timeframe scare her away or provide her with an excuse, but instead she chose to make her goal a priority, and we can all learn something extremely valuable from that. Click here to read about her journey to making that decision to taking part in this Hibbing Daily Tribune article.

A Season of Giving

This time of year brings people together as they travel across the country to meet up, enjoy a family meal and gather for religious holidays. During this time, we may be inundated with requests to give back and volunteer. I’ve always been impressed with how generous and giving members of the EB community are in supporting each other year-round. The holidays remind us that we are not alone and that others may be in need of a helping hand. And we’d love nothing more than to see members outside our EB community embrace this giving spirit all year to support the patients, the families and the caregivers that make up our community.

 

So if you have any friends or family who may be expressing an interest to get more involved in championing a good cause or especially, if they indicate a desire to support one of your favorite EB-focused organizations, remind them of these various ways their family (and yours) can continue to help the EB community not just during this festive, giving season but throughout the entire year.

 

  • Host a neighborhood or city-wide fundraiser or pitch in to assist with one.
  • Volunteer to support a favorite EB organization and reach out to that group to find out specifically where there are unmet needs.
  • Develop EB awareness campaigns and contact local media and area civic groups to seek opportunities to promote these campaigns.
  • Use social media accounts to feature links to EB-related headlines and important information to educate friends and colleagues.
  • Talk with local businesses about being part of an effort to raise awareness and funds through their donation of a small portion of their profit proceeds on a given date in exchange for publicity.
  • Provide a local EB family direct support in the form of fundraising dollars raised.
  • Learn basic wound care duties and offer an EB family close to them backup caregiver duty for parents to run errands or enjoy some brief personal downtime when needed.