Posts belonging to Category 'EB Voices'

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.

An Update from the DebRA Board

Earlier this spring, I shared here on the blog about my new expanded role with DebRA, as president of its Board of Trustees. In that post, I promised that I’d share news from time to time. After recently featuring DebRA’s executive director Brett Kopelan as a spotlighted guest in one of our two-part Q&As and given we’re going into one of the busiest times of year from a fundraising and awareness-building perspective with EB Awareness Week right around the corner, this seemed like the perfect time for a little update.

I had noted in my last blog that some committees were already hard at work and others just forming and yet to be created. We continue to meet monthly and look for opportunities to grow and expand our board’s depth of knowledge and strategic and creative reach. If you are familiar with how a board of directors or trustees operates, then you know that a board is always evolving. Two of our primary jobs are to help fundraise and to set the strategy for DebRA based on our collective knowledge and experience and Brett’s recommendations as the organization’s leader to determine our focus and objectives. Our board is already a diverse mix of expertise, from bandage manufacturers and distributors to marketers and EB family members, but we’re not done growing. We expect over the next 3-5 years to add others to the board to bring even more new ideas and skill sets to help us grow, including those in research and others with advertising and media backgrounds.

In his recent interview with EB Resource, Brett touched upon one of our key goals of raising overall awareness of epidermolysis bullosa with the general public. To this end, we are going to embark on some really exciting things including a public awareness ad campaign with a well-known performer lending support. In order to get the public’s attention, we are going to have to look at all possible means of putting the EB in front of the most people in order to have the most potential impact – on overall awareness and on fundraising efforts. Our EB community is a wonderfully linked and supportive one, but it is a small one and it is going to be our mission to bring more people into that community to lend their own support and resources wherever it can do the most good for EB families.

It is a very encouraging time to be part of this organization’s Board of Trustees. People often ask me what they can do to support our efforts and it really comes down to passing it on, spreading the word, doing whatever necessary to ensure that the people in your circle have heard of EB and know its devastating ravages on a patient diagnosed with it and his or her loved ones. This next year, especially, will be a pivotal one for DebRA and its Board of Trustees and I am looking forward to every opportunity we have to make a difference and will keep you updated as much as I can.

Q&A with DebRA Executive Director Brett Kopelan Part I

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When we approached Brett Kopelan, executive director for DebRA of America, about doing an interview, we realized what a hectic time it was as DebRA was relocating its offices then. But we were thrilled when Kopelan agreed to spend a little time with us to talk about his role. Kopelan became executive director of DebRA in January 2011 after serving on its Board of Trustees for three years.

In this first blog of the two-part interview, he shares his family’s own EB story and how he came to take on a significant role in an organization that has held such personal meaning to him and his family.

 

EB Resource (EBR): For those who may not be familiar with your own EB story, can you share a little about how you first became aware of the organization and then later got involved?

Brett Kopelan (Brett): In November 2007, my first and only child Rafaella was born and diagnosed with recessive dystrophic EB. Getting a diagnosis was a little difficult even though we were in the NICU. It surprised me that it took 5 or 6 days to even get an idea of what it could be given that we live in New York City that has a multitude of hospitals and medical schools. After they told my wife, Jackie, and I what they thought it was I called my brother who is a physician and after his response which consisted of “oh” and a four-letter word, I ran to the computer to Google it. That’s when I realized a Google habit can be a bad thing when I started reading about the disease and what was in store for my daughter and us. At that point, I said I really needed to find a national organization and to start networking so that I could find the researchers working on a cure or treatment. My first call was to the DebRA offices here in New York and to the DebRA Nurse to start gathering as much information as I could about EB.

 

EBR: So you were basically going through the same thought processes and actions as do families who come to your organization now upon learning of an EB diagnosis. What was that experience like?

Brett: At first, it wasn’t scary; it was exciting, especially given what the two physicians said to us. Then it got downright scary. When my daughter was born, she was missing skin on both feet and the back of one hand. She was two weeks late and our OB/Gyn and the on-call pediatrician at the hospital both said ‘don’t worry, she’s just overcooked,’ and that was the official diagnosis. So Jackie and I thought, ok no big deal. About six hours after I left the hospital, my wife called and said they’d brought Rafi into the NICU. The next morning when we went up to see her that’s when, as I put it, the earth fell out from under our feet. She had blisters all over her body and they didn’t know what was going on. A few days later, we were lucky that there happened to be a pediatric dermatologist who happened to be walking the floor of the NICU who happened to hear someone say ‘what is the cause of these blisters’ and she happened to have experience with EB in fellowship. So there were a lot of things that intersected to help us get some kind of a diagnosis, which I later learned, would be considered somewhat quickly.

 

EBR: How did you become actively involved working on behalf of DebRA?

Brett: When you start reading about the disease, you learn how grim the outcomes are in particular with Rafi’s diagnosis. So my first thought was I needed to know all the national or international researchers and funnel money to the ones I thought had the best chance of bringing a treatment to reality. I thought the best way to gain all that information was to network my way onto the Board of DebRA.

 

EBR: When you are first talking with someone about your role with DebRA and what the organization does, what’s the first thing you want them to know about EB, maybe something that you don’t feel is getting across to the public?

Brett: After my daughter was born, I said ‘wow, this is really the worst disease I’ve never heard of’ and we turned that into our tagline in our marketing campaigns. But I really want people to understand that, much like cystic fibrosis or muscular dystrophy, there is this rare disease out there that attacks the individual with EB and the family on multiple levels – physically, it’s clearly very painful and financially, it’s incredibly expensive to have the disease and emotionally, it’s extremely hard for people with EB and for the families to watch their child go through this. But, most importantly, I want them to know that now is one of the more exciting times for EB in that we’re so close to a cure. There’s more research going on, more companies coming in and getting involved, and more money funneling in to the research that we’re on the cusp of something huge. Treatments are just around the corner. So I like people to know that the best way to make sure that we can push the needle forward, so to speak, is to get involved, whether that be helping DebRA run one of our events or creating a local event that raises awareness and some money in their community. As awareness grows, money does usually follow, because when people see children that are in pain, they want to help.

 

EBR: So what’s the toughest part of your job?

Brett: I’m the executive director of DebRA, I’m a CFO for a private corporation and on the board of directors for two other companies. So I’m just tired. <laughs> But the hardest part of my job is balancing my schedule to help my wife care for an EB child and being able to push the organization forward and making sure that DebRA is successful.

Next week, we will feature part two of the Q&A with Brett Kopelan during which he discusses specific strategies and initiatives in progress at DebRA and what that could mean for the EB community.

45 Days to EB Awareness Week

It’s hard to believe that EB Awareness Week is just around the corner, only 45 days away.

For those of you who are already deep into the planning stages of your fundraisers or awareness events in your community, please reach out to others here in the EB Resource forum or at your preferred EB organization for any guidance or support. Some groups, like DebRA of America for example, have pages on their website devoted to carrying out a fundraiser in their organization’s name, and other groups may offer helpful kits or fundraiser advice. You just have to ask to see what resources may be available to help make your event a success.

As this very relevant nationally designated week approaches, we wanted to take this time to remind you of various ways you can make a difference for EB Awareness Week, whether or not you’re planning or hosting your own event.

  • Many network TV affiliates and metropolitan newspapers are not likely to be familiar with EB Awareness Week. Reach out to local broadcasters and newspapers columnists in the community. Shed light on the subject with people who have a forum to share with others, and you just might inspire them to start talking about it through their own channels.
     
  • If you have a child or have close family or friends that are enrolled in an area school, consider reaching out to the school to make them aware of this still rarely known disease and what EB Awareness Week is all about, and encourage them to get involved in some way as a school or class project.
     
  • Spread the word about EB Awareness week to members of the clubs, networking organizations and other groups that you associate with. Many of these will be looking for opportunities to take part in some kind of community project or fundraiser campaign. Put a face to the disease by sharing some of the stories available on blogs like ours or at organization websites including DebRA’s.
     
  • Reach out to good friends who own area businesses and let them know about EB Awareness Week including restaurateurs, shop owners and service providers, and encourage them to do something on their own to raise funds and lend a hand. For example, you might suggest to a local restaurant owner that they have a particular night where a portion of proceeds benefits one of the EB-focused organizations or if there is an EB family in the vicinity, where those proceeds go directly to them.
     
  • Sometimes, I’m sure it can feel like you have 101 different social media accounts to worry about but in the case of EB Awareness Week, this is your chance to put whatever ones you have to work. Use all of the different platforms you’re involved with – whether it’s LinkedIn, Pinterest, MySpace or the more prevalent ones such as Google+, Facebook and Twitter – and take that week to introduce facts about EB, statistics, important organizations or studies people should know about. This can be a great time to use social media as a tool that can truly educate and inspire. And it’s already in your hands!

Kudos to These EB Champs

We like to recognize people who are helping to educate others about epidermolysis bullosa in their own unique way as part of our “EB Champs” series. This month, we recognize three people for using their respective forums to reach and educate the public, all involving different media.

Chris Gilman
Chris shares his own story before the camera in “Epidermolysis Bullosa: A Documentary,” a film that he filmed and edited with a partner during which he talks about life as a boy with EB and wanting to participate in sports yet having a chronic condition he had to manage. His father Paul chimes in with his own very similar story and experience growing up. Click here to watch the five-minute film. The piece is honest and fast-paced as Chris uses the medium of film to educate others about what his daily life is like, how EB ravages his body and how he’s managed the disease yet still continues to be active. When he wishes for a cure “not for myself really but much more for these other kids that it’s unbearable to live with,” we are reminded of the generous, thoughtful young man before us.

  • University of Florida
    We do not know the story behind how writer Mina Radman learned of 16-year-old Hunter Dandurand of Crystal River, Fla. We do, however, know that the reporter at the University of Florida’s monthly campus magazine The Post saw an opportunity to educate the public in featuring the young man diagnosed with the little known-disease EB. Every story told results in more people informed who did not know before, so we applaud the school and its team at the Post for a great story and using their medium to reach out and enlighten. Click here to read that story “Unbreakable,” which ran in the May 2013 edition of The Post.
     
  • Paul Caruso
    When we heard a story about a man winning $4 million from a Massachusetts State Lottery instant game, we were of course happy to learn of someone’s good fortune but it was just another announcement of a person we did not know becoming suddenly much more financially secure. We soon learned that the man, Paul Caruso from Braintree, Mass. had informed the media that he would be donating some of his winnings to Pioneering Unique Cures for Kids (PUCK) as he had lost his own son to EB last year. We were positively taken by this father who saw a sudden cash windfall as an opportunity to support an organization focused on finding a cure for EB and used that unexpected time in the public eye to help spread the word about a disease most people do not know. His generosity and spirit impressed us completely. Click here to read an article about the win and his announcement.

Community Sound Bites

Our EB Resource Facebook community can be a great resource for sharing suggestions and offering feedback on a number of topics that impact EB families directly. We recently listened in to hear what people are talking about. This is just a small sample. We encourage you to visit our Facebook page regularly to make your own voice heard and contribute.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

  • When we learn about vendors offering to donate a portion or all of their profits for a particular item to EB organizations, we do our best to get the word out to others so they have an opportunity to evaluate and support them if they so choose. Last month, we told our Facebook friends about Valley Vintage Scents and their handcrafted lockets for which they donate 30% of all profits to EB-related causes. One of our members Kathleen Gravers Cornell was kind enough to share her own consumer experience as a courtesy to other members: “Great lockets and very reasonably priced…While it didn’t really have much of a scent, I was very happy with the locket. Nice workmanship and detail.”
     
  • The Facebook community is also a great place to keep people informed when there is news or resources that members should know about. When we reminded everyone in May that EB Awareness Week was just five months away, the team at DebRA chimed in: “Everyone is invited to join our virtual Facebook event here: http://bit.ly/EBawarenessweekFBevent – and if you’re planning on hosting a DebRA local event to spread EB awareness, please email events@debra.org and let us know so we can send you materials.” In April, we brought up the topic of the financial toll that EB can take on families and DebRA’s executive director Brett Kopelan took the opportunity to reach out to our community’s members to explain the registry’s role in calculating these costs: “One of the reasons we, DebRA of America, created the EB Care registry was to be able to measure the true burden of care of living with EB. We wanted to know the pharmacoeconomics as well as the financial burden placed on families. It is important that all EB families sign up for the registry and enter as much data as you possibly can.” When we promoted a group of springtime EB events in a May post, our friend Shawn Ripps Tavani made sure that we didn’t miss one: “Don’t forget about Butterfly Wishes for Ellie in Atlanta, GA.”
  • Sometimes our community can be a sounding board for members to share news about other families in need or other inquiries. Earlier this spring, community member Rochi Orbegoso Pea shared news about one family’s critical circumstances: “I just posted a plea to help 6-year-old Araianita, she needs esophageal stenosis surgery and her family is fundraising to bring her from South America to Ohio. Please let me know if you can help.”
  • Our members can be very generous and not only step forward to offer supplies they don’t need or volunteer to help out in some way but they frequently offer details about their own experiences to shed light on what may or may not work in different scenarios. In April, when we asked families about reaching out to their own schools to enlighten them about EB, Sally Contreras Mata shared her own experience: “Best thing I have ever done when it came to school was set up a “meet & greet” a few days before school started with the teacher, my daughter and I. All taking place in the classroom my daughter will be for the year. This way, she could pick her desk and be comfortable the first day in school…If my daughter’s anxiety level is diminished and she feels at ease then everything else falls into place!”

We know how busy we can all get between work, other outside commitments and some much-needed downtime and recreation, so when our members take a few moments to leave a message in the Facebook forum for others to learn from or to initiate a conversation, that means a lot to us. We hope that you’ll continue to visit the EB Resource community daily and jump into the discussions, sharing your thoughts along the way. We’d love to hear from you and so would the other members. So, thanks in advance for the conversations to come!

Building an Effective Blog

We’ve offered tips in the past about blogging, because it tends to be one of the more popular and effective tools for connecting members within the EB community. But what are the basic elements or characteristics that contribute to a blog’s success in resonating with visitors? If you are thinking of starting your own EB blog or perhaps re-launching an existing one, here are some important aspects to keep in mind.

  • Blogging tools. We won’t offer our vote on the best blogging tool to use, because there is no such thing. You’ll find people in the EB blogger community using WordPress and still others using Blogger or Blogspot, so it varies. We suggest that you review a variety of EB blogger sites and when you find one in particular laid out a way that feels easy to read and right for you, do your homework. You should be able to tell from the address or at the bottom of the home page which tool was used to create it. But don’t be afraid to reach out directly to the blogger and ask them what they like and don’t like about the tool – its ease of use, flexibility and accessibility. Then begin the self-serve educational process on your own and dig in. You won’t truly understand the tool until it’s in your hands and you’re wielding it!
     
  • Frequency of posting. When people subscribe to a blog, there is a certain level of expectation – that you will get the same kind of content with the same look and feel on a fairly regular basis. A subscriber may not know exactly what that is at the time but once the first blog update is sent, a set of expectations begins to formulate for future posts. Make certain as you are setting up your blog that you determine what level of posting frequency is going to be realistic for you. Often people set out with an aggressive desired frequency like daily but once they begin blogging, quickly realize that it can be a time-intensive job.
     
  • Nature of content and tone. Similarly, determine what will be the general nature of your content – are you presenting 'day in the life' bite-sized views and sounds of life with EB to educate people who don’t know about the disease? Or are you using your blog to share caregiving tips with those who know it all too well? And what about tone — are you setting out to provide witty observations to bring some bit of humor to a usually darker, more serious topic or does your tone appeal to followers to take action and encourage more civic or social involvement in national or international EB awareness campaigns?
     
  • Interaction. For many, blogs can serve as journals to record relevant details or events in their lives. However, for others, they may be viewed as a meeting place for one voice to pose questions or perspectives and welcome others to contribute to the conversation. Most are often a hybrid of the two. How much interaction do you want to inspire at your blog? Keep this in mind as you plan what kind of content you will be posting, lay out the different features at your blog and establish comment settings.

There are so many wonderful EB bloggers and soon we plan on featuring one of the EB community’s better known contributors as part of our ongoing Q&A interview series. So stay tuned for that very soon! In the meantime, congratulations on the making the decision and taking that first step. Don’t forget: never be afraid to ask questions or seek out advice from those who may be blogging already. We can always learn from each other. Good luck!

Your Voice in the Community

 

How vocal are you about epidermolysis bullosa? It’s possible you may be reading this and not be personally impacted by EB. Perhaps a friend or a family member may be directly affected and you feel compelled to find a way to do more to be helpful.

 

One of the most truly valuable ways that you can show support for EB patients and their families is to become an advocate for them. Use your own voice and roles to educate others about EB in the workplace, in local schools and in the community. You do not need to be personally impacted to make a difference and make your voice heard.

 

So how can you do this? For starters, look for opportunities to get in front of small groups, whether it’s an organization for which you are a member such as a local business chamber, civic group or other professional or neighborhood association that meets. They often encourage their members to participate as guest speakers and to coordinate local fundraisers and awareness events.

 

Consider reaching out to local media about the subject, either through the letters to the editor page of your area newspaper or to community reporters there or at local TV stations to make them aware of a family (or families) that could be in their market who are afflicted with EB. Be sure that if you do reach out and cite specific individuals or families by name that you have first gotten their permission to do so.

 

Launch your own community-wide fundraiser or if one is being planned in your city or a nearby community, take the reins of a team participating in such a walk event, bowl-a-thon or some other activity and spearhead fundraising efforts. Here again, you do not have to personally be diagnosed or have an immediate family member affected to go out to community patrons and tell them about why you’re investing your time, energy and dollars in the EB fundraiser and why they should get behind your efforts.

 

Another very useful way that you can make a difference and be heard when it comes to issues directly affecting EB families is to reach out to your elected officials at a community, state and federal level. How much do they know about EB and how their decision-making about health insurance-related legislation, for example, specifically impacts families facing rare diseases like epidermolysis bullosa? Do your own homework about the types of bills that may be in the works and consider appealing to these public servants for their support of EB families just like those who mean so much to you.

 

The key to any involvement you might embark on to support the EB community is to get involved wherever it feels right for you. Those impacted by the disease, both your friends or family, and the other families just like them will appreciate your efforts to shed some light on a subject for many who are still in the dark.

EB Dads We Celebrate

This is a month where families everywhere celebrate “dear old dad.” Many families honored these revered men this past Sunday with special Father’s Day meals, gifts and activities. We wanted to take a few moments this month to use our semi-regular EB Champions feature to celebrate some fathers in the EB community who we think deserve a little extra recognition for the work they do to support EB patients and their families year-round. There are many great parents we could honor every week – these are merely a trio of awesome dads out there, and we thank each of you this week for all that you do.

  • Brett Kopelan
    Brett Kopelan serves as executive director for DebRA of America and is focused every day on how to improve the lives and impact the futures of EB families everywhere, and has been for many years, previously serving on the organization’s Board of Trustees. While he and his team may have set out to help EB families face the day-to-day challenges and address long-term issues affecting those diagnosed with EB, he does have a personal mission at stake, too, as a father to a little girl diagnosed with RDEB.
     
  • Tim Ringgold
    Tim heads up Pioneering Unique Cures for Kids (PUCK), a parent-driven initiative of Children's Cancer Research Fund, who have made it their collective mission as noted on their website, through funding and advocating for cutting edge research to help “transform rare, incurable childhood diseases into curable ones, one disease at a time.” Tim is frequently a guest speaker in the community about the organization and EB advocate, working tirelessly to educate others about the disease.
     
  • Alex Silver
    Not only is Alex co-founder with wife Jamie of the Jackson Gabriel Silver Foundation named for his five-year-old son diagnosed with EB at birth, but he continues to be a major champion of clinical research support efforts. He even testified before the Senate Committee on Health, Education, Labor and Pensions back in summer 2010 in an effort to attract greater attention and focus on the treatment of rare diseases.

Mommy Bloggers and the EB Community

Mommy blogger communities have emerged across various parts of the country as a powerful voice and growing sphere of influence, as consumers, as parents and as citizens and neighbors. But in the EB community, these bloggers seem to have truly embraced a very significant role to play: as members of an intricate support system and knowledge base.

For the past several years, I’ve watched the EB community grow as more and more families have become actively involved in raising awareness and research dollars. That has also included witnessing the EB voice of only a handful of parents of children with EB, grow into a much louder one comprised primarily of mothers looking out for not only their children but other families within the community, as well. And even when some of these voices have been momentarily silenced after the deeply personal and devastating loss of a child, many of them have promptly returned to the blogging community to continue speaking out for the community through their blog.

In other blogger communities, moms often focus on finding better solutions – maybe it’s more affordable baby supplies, a better-made garment or a suggestion for a pediatrician, local hair stylist or family-friendly neighborhood restaurant. If you scan some of the more active EB mommy blogs, you’ll see it’s not much different, but perhaps the focus is on wound care supplies, EB-friendly clothing sources and suggestions for flexible locales to take out the whole family and ensure a fun, safe visit for all.

There are so many wonderful mommy bloggers in the EB community, we couldn’t possibly have a favorite but we’ve been touched by the different ways these wonderful moms have transformed into great communicators and leaders, from Patrice Williams to Sara Denslaw to Courtney Tripp Roth, just to name a few.

For those of you that follow specific mommy blogs in the EB community, who have you chosen to follow regularly and why? What was it about their specific blogs that compelled you to return or even interact with the mother behind the blog? And for any of our EB mommy bloggers who may be reading this, we’d love to hear from you, too. Why do you make such a commitment of time and energy to be a participating mommy blogger in the EB community? What do you feel you get back in return for that investment?

To all of the bloggers out there – moms, dads, those diagnosed with EB themselves who wish to share more about their experience, educate or connect with others, I just want to say thank you for all you do to help define EB to the world and bring more attention to its deep impact.