Posts belonging to Category 'EB Voices'

Turn Talents and Loves into a Mission










Over the years, I’ve met many supporters of EB-focused organizations who first learned of the disease through a friend or family member directly impacted by the disease or who came upon a story about someone in the community diagnosed with it and felt compelled to do something to help. Whenever we learn of someone facing something as daunting as epidermolysis bullosa, it’s common for part of that initial reaction to be an internal search of ourselves: “what can I do that might help these people in some way?”


Since most of us may not be equipped with medical research backgrounds or caregiving experiences, we may have to be more creative in that introspection. I always have a simple suggestion to those who ask me what can I do beyond a donation to debra of America or another EB-focused nonprofit: repurpose your talents to do good.


What do I mean by that? Perhaps you are a graphic designer or website developer and could support an EB family looking to create literature about EB for an upcoming fundraiser or to launch a simple site to host a blog or an event site. I’ve met up with photographers who offer special photography sessions for EB families sensitive to the family’s needs and budget. Some jewelry or fashion designers have devised ways to take their creativity and launch campaigns through the sales of their special crafted jewelry pieces or garments to raise funds and awareness for EB research or supplies funding. Writers have pursued articles in community and metropolitan newspapers, video journalists have sought families willing to let them share their story with others on YouTube or via area news programs.


But a person doesn’t need such a specific skill set to be a provider of hope and support. A local business owner can host events at their shop or restaurant to raise funds on select evenings or special occasions, and community groups like book clubs and women’s groups can coordinate events or ongoing means for getting neighbors on board to support a local family or adopt one in another part of the state or region, or throw their support behind an EB-focused organization that can assist families across the country.


So, what can you do? Think about our own networking circles, skills or interests? How can you take your own talent or passion and transform it into action to support EB families? I encourage you to take a little time later today to ponder that question. And if you do embark on a new venture to lend your support, I hope you’ll reach out to us here to comment on this blog or at our Facebook or Twitter pages to update us on what you’re doing. We’d love to hear from you. Good luck!

Your Role in EB Awareness Week


The last week of October marks EB Awareness Week. For those who are unfamiliar with it, this special campaign was launched globally in 2007 and is now recognized by 112 countries across the world. Each year during the week of October 25-31, organizations and individuals across the world hold EB awareness events and fundraisers to not only build more awareness for epidermolysis bullosa but also garner greater media attention and involvement at all levels – in the business, social and legislative spheres.


For those directly impacted by the disease or with friends and family facing EB, it can be an ideal opportunity to host an event or get behind an established campaign. But what if you are neither and have only recently learned about EB and its devastating effects on those afflicted — what can you do during EB Awareness Week 2017?


Here are just a few ideas.


  • Check out the event calendars at various EB-focused organizations, such as debra of America, the EB Research Partnership and EBMRF, to name a few. See what upcoming campaigns are lined up during EB Awareness Week and figure out how you can best support organization- or supporter-led events in your community or online
  • Use avenues via your existing channels to raise research dollars or host your own event during EB Awareness Week. Many of us network informally, in the neighborhoods, community sports and school groups, and quite a few of us in the business sector, may do so for our services and companies. Why not look to any of our existing involvement as a channel to share and educate. Propose a campaign or small event held during the week or later in the year. Raise funds that could support a local family affected by EB or contribute to an organization with programs in place to support EB families across the country. Prove that there truly is power in numbers.
  • Encourage your children to get involved and learn more about EB. There is never a better opportunity than an awareness week for an important cause to teach our kids lessons in compassion and philanthropy. Demonstrate firsthand to your children the value of caring for others beyond ourselves and making a difference in the community.
  • Reach out to local media beforehand to make them aware of EB Awareness Week and if you know of anyone in your community directly affected by EB, encourage them to share their EB story with area newspapers and TV news affiliates.
  • Finally, here is one thing you can do straight from your phone or computer. Help EB Resource spread the word during our Annual 24 hour EB Tweet-a-thon that kicks off at 10 a.m. EDT Wednesday, Oct. 25 and runs through 9 a.m. Thursday, Oct. 26. We will be posting hourly on Twitter for 24 hours straight in recognition of the first day of EB Awareness Week. This year’s theme is 24 Reasons to Take Part in EB Awareness Week. You can help us reach even more people with your RTs. Share our posts with your own followers on Twitter and educate them about epidermolysis bullosa, too. Add the hashtag #RT4EB17 and help us raise awareness and compassion to learn more about EB as we set out to grow our community of support for EB families.


EB Community Goes Beyond Sea to Shining Sea


As we Americans recover from our Independence Day festivities, I thought I would take a moment to remind all of us just how broad the EB community is. Because it is such a rare disease, EB families can feel alone sometimes or like they are part of a very small network of communities scattered across different parts of the country. But as a greater number of people become familiar with epidermolysis bullosa here as well as abroad, the community at work to raise EB awareness and research funds, and tackle the clinical challenges at hand becomes bigger. International efforts are in place across the globe to find better treatments and work toward a cure.


In addition to the Debra International alliance hub based in Vienna, Austria, there are 50 Debra member groups established throughout the world. Besides debra of America, a number of very active networks support EB families in Australia, Canada, the United Kingdom, Ireland, France, Germany, India, Italy, Japan and Switzerland, to name only a few.


There are also research clinics and universities who have committed to Debra International’s EB-CLINET Partner program, a network of EB centers and experts designed to establish a centralized global site for the exchange of EB knowledge and clinical experience. Members of this international network are scheduled to meet at its fourth conference this September in Salzburg, Austria. It will provide participants a helpful, in-person opportunity to interact and share valuable clinical information with each other.


EB without Borders is another program that has been established (through Debra International) to support EB patients and their families in countries where there may be no support or debra member group yet established. Participating Debra member groups who support this initiative might provide these other countries in need mentoring support for the physicians trying to help the families, or other specialized services, supplies or knowledge.


EB clinical research and awareness campaigns are underway around the world. Though it may feel at times like we are alone as EB families, thousands of people across the world are not only facing similar challenges but have set out to conquer the same goals in mind: creating better treatments for this disease and hopefully one day eradicating it completely.

Your EB Story


What is it that draws us to want to know more about other people we may meet along the way? Often there is a common interest or bond of some kind. Within the EB community, many parents have taken an otherwise trying facet of their lives and found a way to not only inspire and educate others, but help build a support network. This has been done by simply sharing their story, whether it is by hosting an event in their community and introducing neighbors to what living with EB is all about or proactively reaching out to local media to share their story with a larger audience.


It can be a tough decision on how much we want to share as a family. In my various roles interacting with the EB community, I always strive to be an advocate for families and a supporter in whatever way I can help best, such as directing someone to a resource that I think might be especially helpful to a family. But my role as a mom and as a parent who has lost a child to the devastating disease only motivates me more to reach as many families as I can every day and educate others about EB who cross my path.


Before you decide how you can best tell your family’s EB story, you must determine just how much you are willing to open your family’s life to the outside world. As you often see on the EB Resource Twitter and Facebook feeds, several families have shared with local TV affiliates and newspapers about their family, and that includes allowing those media outlets to capture visually a candid view of the disease and what caregiving is entailed for a person with EB. If you agree to tell your story this way, you must be prepared for the possibility of additional attention after the story runs. Some families instead choose to tell their story their own way through blogs, books, photo galleries or YouTube videos. If you want to be an active part of the EB community and support and educate others, then do not lose sight that you are ultimately the final decision-maker on what is the best way to do this that will be the least disruptive to your family.


Whatever your personal circumstances may be or your view on what your role could be within the EB community, I encourage you to take the time to contemplate what more you can do to take the experience of living with EB and translate it for others. The wisdom and support you may lend to another family who have only begun to learn about the disease and what this diagnosis will mean can be invaluable. The impact you can have on bringing greater awareness to a relatively unknown subject like EB is immeasurable.


Helping the EB Community Be Heard

Every year, EB communities across the globe take this upcoming week to reach out to others and educate them about epidermolysis bullosa. EB Awareness Week is recognized and runs October 25 through October 31 in 112 countries around the world. During this time, many organizations focused on the disease coordinate awareness campaigns and fundraising events to not only draw more attention to a rare disease still unknown to many but also to support efforts to develop better therapies and a cure.

In the past at our blog, we have offered many suggestions for how you can make the most of your EB Awareness Week including tips for planning fundraisers and plotting out your own awareness campaign. This week, we want to ask you for some assistance. In addition to coordinating your own activities and support for others’ events, you can help us this Tuesday and Wednesday.


Once again, EB Resource will be holding its annual 24-hour EB Awareness Tweetathon. During this time, we will tweet every hour starting at noon on Tuesday, October 25, the first day of EB Awareness Week and continue to post through noon Wednesday, October 26. Our theme this year is EB: Just the Facts, Ma’am, and we will be focused on sharing some things about EB that followers may or may not realize about it.


So what can you do? Share, share, share! Retweet our hourly tweets to your own followers including our hashtag #RT4EB16 and send out any of your own tweets about EB with the same hashtag in support of our EB Awareness campaign. Help us spread the word and educate others about a disease so few people understand.


Good luck, everyone, in your efforts to raise EB awareness this week. Be sure to share with us all that you’ll be doing, too, at our Twitter and Facebook pages. And don’t forget to stop by our Twitter page and help out, starting Oct. 25 at noon for 24 hours straight!

EB Moms on a Mission

Mother's Day is around the corner and we hope that all of our moms in the EB community will enjoy a beautiful and relaxing day filled with whatever will help refresh and rejuvenate them most. In my job as well as my involvement with debra, I meet up with EB families all the time, and I know personally how challenging being a parent can be let alone a parent to a child diagnosed with EB. So although this blog may be geared toward our moms out there because of the time of year, I certainly empathize with our patient, hard-working EB dads, too.



It can be very easy as a mom and a caregiver to overlook our own needs. We always hear people who share stress management strategies say to follow the example in an airplane emergency and put on our oxygen mask first before we assist our loved ones, but how many of us actually remember to do this? We want to share some reminders at this time honoring the love, patience and care of mothers everywhere but especially here in the EB community.


  • Be willing to ask for help. Many of us are taught as children to become self-sufficient. Some of us may have grown up needing to be more independent more quickly due to single-parent homes or dual-income households where both parents work outside of the home, and as we grow older, we can become accustomed fending for ourselves. However, when challenges arise as a parent, we must remember: we are not alone. If our time, energy or skills are exhausted and others brought into the home could alleviate some of the stresses of care giving for a child with special care needs, such as the demands of EB, we will want to release any resistance we may have to bring others into our circle and ask for additional support. This may be to hire a part-time caregiver or someone to assist us with managing other duties in our household so we are not trying to wear too many hats at one time and putting ourselves under unmanageable pressure.
  • Build downtime into your schedule, whether it is a 20-minute date with yourself to do something solitary and peaceful like meditation or yoga, or simply going for a walk when another member of the household can relieve you of care giving responsibilities for a brief timeframe. Stepping away even for a small period of time can offer you time to collect your thoughts and replenish your energy, and that also translates into your mood as you resume caring for your child.
  • Seek resources that offer the safety, comfort and discretion you need to discuss your challenges and receive feedback and support. Giving yourself permission to share the stresses and challenges you face on a daily basis with a local caregiver support group, a licensed counselor, an online forum, family friend, or clergy member with whom you feel you can trust can provide valuable opportunities to vent frustration and possibly take away alternatives as you try to deal with difficulties you face.
  • Accept your humanity and forgive yourself. As parents, we are not always going to get everything right and for a lot of us, we will make mistakes along the way but each mistake comes with an important lesson we absorb and in the process, we learn more about ourselves — our strengths, our weaknesses, our capabilities and our limitations. As long as we are willing to admit this and be prepared to learn, adapt and keep plugging along, the next challenge will be that much easier to face and tackle.


Being a parent is never easy, and we salute all of you but particularly our moms in the EB community today as this Sunday serves as a reminder for all you do. Let the loved ones in your life honor you, but don't forget to honor yourself by giving your own mind, heart and body precisely what they need to help you continue being the caring, loving and amazing moms you are.

EB Voices on a Mission

The EB community is brimming with supportive people who have figured out the best way to use their talents and platform to make a difference in the lives of families impacted by the disease. We like to occasionally use our blog to recognize those efforts both as a way to share our gratitude for their creativity and determination as well as to inspire others to find their own unique path to do some good for EB families. For May, a month associated with celebrating some very special women — moms everywhere — it seems appropriate that most of the EB voices being celebrated in this blog are moms or daughters on a mission to support the EB community.

  • Elaine Fuchs, stem cell pioneer
    Fuchs recently earned the highest scientific honor awarded for her groundbreaking work in stem cell research. She has been hailed as the first scientist to biochemically characterize keratin and then go on to clone identified strands in her lab. Click here for a recent article to learn more about a woman who has truly helped the EB research community make tremendous strides.
  • Dozier-Libby Medical High School “Super Students”
    On the surface, Iliana Azevedo, Cassie Pambid, Maria Romero and Diana Sanchez might simply appear like typical teenagers or high school students but a recent school project that implored them to “Be the Change” was precisely the inspiration they needed. The group ventured into learning more about something many people knew nothing about — epidermolysis bullosa. Once they did, they felt compelled to do more and so they did, and raised $2,000!
    Click here to learn about this group of amazing students in a recent article.
  • Patrice Williams
    As a mom both to 6-year-old Jonah Williams who lives with EB every day and a toddler, Patrice Williams is one busy lady but she continues to be a regular voice as a mommy blogger in the in the EB community with her Before the Morning blog. And just this weekend coming up, she and husband Matt will host their fourth annual Jogging for Jonah event in Tanglewood Park in Clemmons, NC. Proceeds benefit DebRA of America. Click here for details about the event. Kudos to Patrice and her family for doing their part to remind us that no matter how busy our lives can get, there is always a way to come together and do something good for others, too.

These are only a few of the awesome people who are making a difference in the lives of others here in the EB community. There are many more and we will continue to introduce them to you on a regular basis on our blog.

If you are involved in any upcoming EB fundraisers or awareness events, or know organizers who are, please send us the information so we can share it with our friends on Twitter and Facebook, as well as here on the blog. Just email me at

Thank You, EB Voices!

We wanted to take this month that celebrates thankfulness to send along our own gratitude to the individuals and groups whose work and words have helped to raise awareness, and, in some cases, research or support dollars for those diagnosed with EB and their families. We have frequently featured them here and called them "EB Voices" because they, in their own unique way, have spoken up and made their voice heard. This can be really difficult, particularly in a world of so many loud voices booming back at us while we try to bring focus to a rare disease like epidermolysis bullosa.

We have often featured those voices through interviews or special guest blogs. Since some of our followers could be new to our blog or have only joined us this year, we thought it would be a great opportunity to share some of those past links with you as our way of introducing you to merely a handful of the wonderful people out there who do their part to raise awareness about EB every day – some are patients, others  family members, and still others, authors or advocates, but all of them have something to say. And we are appreciative that they take the time to do something about it.

So we introduce you to some past featured EB Story conversations. Thanks for reading!

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.

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.