Posts belonging to Category 'EB Voices'

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 leslie.rader@hollisterwoundcare.com.

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.

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.

Small Steps Mark Big Success

This week, we continue to reach out to others and educate as EB Awareness Week rolls on, concluding Thursday, October 31. For those who are not usually comfortable putting themselves out there in such a visible way to campaign for a cause, even one so close at heart, it may seem a little intimidating. But like many things that we must do for a greater purpose or good, sometimes we just have to step out of our “proverbial” comfort zone and embrace the task at hand.

 

There are big challenges ahead of us in the EB community but as you recently may have read in an interview with DebRA executive director Brett Kopelan, there is also much opportunity and some very exciting things happening within the research realm, for example, that could lead to improved treatments and possibly even a cure in the future. Some great progress has been made by several of the universities and children’s hospitals who are heading up the clinical trials that could be completely pivotal in charting the course of EB in the future.

 

Much like the tasks before us on a day-to-day basis living with EB and caring for someone with EB, the tasks we must embark on during EB Awareness Week may seem daunting, and we may feel sometimes like we’re running uphill with many miles to go. Because of this, if we’re not careful, we can simply write off the outcomes of a single community awareness event or school fundraiser as insignificant in the big picture. But they are not. Far from it. EVERY small step that each of us makes to educate one more person about epidermolysis bullosa contributes to a huge gain in awareness. Our work may be on a smaller scale but it does in fact contribute greatly to the overall impact of organizations like DebRA of America, the Jackson Gabriel Silver Foundation and EBRMF, who continue to find new creative ways to get their messages in front of key decision-makers, influencers and contributors. 

 

So as you finalize those details on an upcoming fundraiser you might be hosting at work or an online campaign that you are planning through one of your social media channels, do not minimize the work you are doing. It is all QUITE significant and each inch of progress does ultimately contribute to miles of progress.

 

If no one has had a moment to break from their own planning to say it to you already, then let us be the first ones to say it — thank you. For all you do to help be a voice in the EB community in whatever capacity you can. It is needed, it is essential and it is heard.