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!

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.

 

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 II

Last week, we began featuring part I of a two-part interview with DebRA of America executive director Brett Kopelan, who recently chatted with EB Resource as the organization was undergoing a relocation of its main NYC office. In part I, he shared how he was first introduced to the organization as an EB parent. In the conclusion of our interview, the executive director discusses specifically some initiatives his organization is currently working on to help raise awareness about the disorder.

 

EB Resource (EBR): What is DebRA of America’s main focus?

Brett Kopelan (Brett): Well our main focus is to fund the research that will eventually find a cure or treatment for this disease. I like to say that we are dedicated to easing and eventually eradicating the inherent daily stress of living with EB. But, what separates us from the other organizations is while we support that early-stage research, we are the only organization that has programs and services for the person with EB, the families and the caregivers. For instance, through our Wound Care Clearing House we give out free bandages to people who don’t have insurance coverage or have exhausted their coverage. We have a family crisis fund that helps offset the incredibly expensive cost of the disorder. People can apply for a financial grant to help with doctor and prescription co-pays, medical equipment or anything related to the care of an EB person. We’ve got our Patient Care Conference that runs every other year and that gives families the opportunities to not only socialize with each other but also meet and listen to the experts in clinical care and get updates on the status of research. We don’t charge any money for people to come and each year, more and more people do. Because of EB’s burden of care financially, in many cases this conference becomes the family vacation. And what’s really important is that people can be themselves without having to explain anything. Believe me, that is a relief. Not having to explain the open wounds or say ‘no, she wasn’t burnt in a fire’ is nice for a change. Anyway, there’s our New Family Advocate program where we send a box of supplies and important information and an experienced caregiver to train parents in the care of the new infant and on the use of the supplies. We also recently launched the Smile Fund. It’s a wish-granting program to fulfill small wishes for someone with EB on a monthly basis to bring a smile to their face, whether it’s an iPad or concert tickets. And as the need arises, we’ll keep developing new programs. For what’s considered a smaller organization, we provide a lot of services that are very practical and proactive, and probably our most used program is our nurse educator. People can call or email her and she’ll respond to answer their questions. We’ll be expanding that program soon.

Strategically, we have to bring a larger audience into the EB community and we’re going to do that by buying advertising space and start showing people what this disorder is. If our metrics are right, and we’ve been very conservative in this regard, it is our hope that we might be able to get 25,000 new active donors through advertising. It’s important to go in this direction for so many reasons, not just from a revenue side. The awareness quotient is incredibly important. For instance, last year, there were actually questions about EB on the medical boards, which was a huge thing because all of a sudden you may attract a greater number of younger researchers and clinicians who will gain an interest in it just by being exposed to it. That leads to more research, potential treatments and different ways of doing care. So it’s not just about raising more money.

 

EBR: Many of us in the EB community hear about multiple EB-focused organizations out there, all operating independently to serve the community and wonder if there is any collaboration taking place among these various organizations. Would you speak on that subject?

Brett: Some of the bigger organizations do collaborate in one way or another. I speak regularly with EBMRF and with JGSF to talk about various strategies and events. There are organizations that are solely focused on supporting early-stage research and other organizations that try to help the community and those with EB as best they can. There are a lot of other good organizations out there, but there can be pros and cons about having multiple organizations. The biggest difference with our organization from others is we have a scientific advisory board that helps us determine the best research to fund both nationally and internationally. We’re breaking up our scientific advisory board into a clinical sub-group , a basic science subgroup and an international subgroup to allow for the most up to date trends in care, in research projects and priorities. The clinical subgroup will allow us to be the only organization that can actually provide quality medical information to those with EB. With the rise of social media there is a plethora of care strategies being passed around that may not be safe.  I want people to be able to point to DebRA as providing not only the programs and services but also information from the professionals that specialize in certain areas of care, for instance pain management.

As more people flock to social media, there are a greater number of smaller organizations popping up that really do want to help but without knowing it may actually prove detrimental. For instance, let’s say a new family goes to Facebook and sees 17 organizations. Where do they go? How do they know who to call first? Where will they get the right information and get into a system that gathers information that helps the overall cause? Some of the first questions the pharmaceutical companies or early-stage researchers always ask are ‘what is the prevalence of EB’ and ‘what is the incidence and burden of care,’ and the only way that we can accurately put this information together is by getting a great hold of the market. I think that’s where the problem of having multiple organizations comes in, that you end up losing some of the critical information that’s out there and that pharmaceutical and biotechnology companies are asking for. As way of example, if more than one organization distributes wound care supplies, we are unable to fully calculate the cost of having this disorder. DebRA uses the actual cost of care when advocating with the government about reimbursement rates. When a market becomes fragmented it leads to inefficiency. As another example, if all of these organizations ask the same group of people for money, while the overall amount of giving doesn’t change, the level of effect of that one dollar does. Giving thirty three cents to three different organzations is not as effective as giving one dollar to one. That same dollar can have a greater impact on the community. Mind you, I am not saying there should only be DebRA. I am saying that too many organizations will hurt the overall cause.

 

EBR: Are there any areas where we may be seeing other opportunities from possibly outlying influencers that could have a potential positive impact in helping the EB community in some way?

Brett: One of the other things I do is speak at events, and I am on the board of directors of the National Organization for Rare Disorders. I got on there to help give DebRA an avenue for advocacy in Washington D.C., and a direct line of communication. Because of my work at NORD, DebRA was able to get EB listed with the Social Security Administration’s compassionate allowance program.  This allows people with a diagnosis of EB to get to the front of the line for an accelerated review when applying for SSI or SSDI. My next goal is to get Medicare and Medicaid waiver programs in place for those with this disorder. We are planning a day on the hill in D.C. in front of Senators and Congressional representatives to talk about the reimbursement issues of the bandages. NORD’s work was instrumental in getting language passed in recent legislation that allows for accelerated approval of orphan drugs and clinical trials. I have also worked with the FDA in setting up a patient review panel for upcoming clinical trials. I would say there are a lot of things going on that are going to have a huge impact on the EB community.

 

EBR: How has DebRA worked toward getting more media awareness for its efforts to support EB families and early-stage research?

Brett: There’s always media outreach and efforts to get media coverage around our events. But media will cover what it wants to cover, so it can be very difficult to predict. I have a director of communications and events who reaches out to media outlets like ABC and NBC. We do press releases and were recently picked up by over 350 media outlets. I think though the amount of coverage DebRA and EB get will increase once our advertising initiatives begin, because media picks up stories when there’s momentum and there is research momentum being built up. Once we’ll be able to effectively tell that story through advertising and through local events, I think more national media will pickup our story. The more important part of a PR campaign is to be able to do something with the results from that campaign. So, one of the things we’re doing is a complete system implementation here that will allow us to capture data, stories and media momentum and act on it. We’re building an infrastructure here at DebRA that is going to allow us to capitalize on a lot of the media work we’ve been doing.

 

EBR: Are there any campaigns or new partnerships you can share with our community?

Brett: From a strategic point of view, we are launching a new website soon that is going to be more image-intensive and video heavy. I am in conversations with some large advertising firms about taking DebRA on as a pro bono client as well. We’re in the final stages of developing the video for the thirty-second commercial. We’ve gotten a pretty famous singer to do voice-overs for it. We’re developing a much more robust direct mail program. We’ve been building infrastructure and stress testing it slowly to make sure that when we go out and allocate enough resources that will allow us to bring in new donors that we can capture and capitalize on all of it. It’s been a successful couple of years but I think with people like Leslie heading up our board of trustees and marshaling the resources there, it’s only going to become more successful.

I’ve been out there talking to some of the larger Fortune 500 companies, but it can be difficult to get a large national company behind you because causes like community betterment seems to be where some allocate their charitable giving allocations. With that said, the Rite Aid Foundation has given us some money. There’s a group of 40 Walmart stores putting together a local event for us, so the advertising component will allow corporate organizations to see that this is a disorder worth supporting and given the breadth of stuff that we do, they’ll say that DebRA is also an organization worth supporting, too.

 

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.

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!

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.

My New and Expanded Role with DebRA

I wanted to take a little time to share some news with you. As most of you know, in addition to my work for Hollister Wound Care, I’ve been serving on the board of trustees of DebRA for more than eight years. I got involved with DebRA because I understood, firsthand, the fight a family has to engage in against EB. My experience as an EB mother really made me want to create a program that we now call the New Family Advocate Program.

Over the years, I have raised in excess of $100,000 to create and support this important program for all the families that have recently received news of an EB diagnosis. Starting and running this program has allowed me to meet with new families in our community and offer them support in the way of supplies, information and access to other resources for which they might have an immediate need. I am proud of this program and the way it has developed over time.

In January of this year, my role with DebRA expanded. I transitioned from serving as a member of DebRA’s Board of Trustees to being elected to the role of President by my peers. My term is for two years, and if you know me well, then you know that I’m excited to play a bigger role.

Recently, I determined that I was not going to be able to coordinate my annual Butterfly Fashion Show and Luncheon fundraiser. To be honest, I have been feeling down about that because it felt like I was failing as an EB parent, which I will always consider myself. When the call to play a larger, more influential role presented itself, I couldn’t have been happier. Becoming President of the Board of DebRA has given me a renewed sense of purpose.

This is a great opportunity to do more for an organization that I truly believe in. My whole mission in life is to help this organization, because it was the first to reach out to me when my own daughter was born. I want to do what I can to help make this organization even stronger. DebRA provides many services to support EB families, but it’s my job as well as that of the Board of Trustees and the organization’s executive director to find additional ways that they can provide guidance and resources where needed as well as encourage researchers to continue their quest for a treatment and a cure for all forms of EB.

So what does this really mean as far as my focus and responsibilities? I will be taking part in monthly executive committee meetings and communicating regularly with DebRA’s executive director Brett Kopelan to stay current on the day-to-day operations of the organization. I also look forward to continuing to create and grow working committees that can define goals and objectives to contribute to the betterment of the entire organization. As President of the Board, I feel my main job is to manage the Board of Trustees and to act as the lead in making sure that DebrRA operates in the best interest of the EB community. I have faith in our executive director, and the entire Board of Trustees is committed to support him and the organization as a whole. Perhaps not so coincidentally, Brett Kopelan is the Father of an RDEB little girl and served on the Board of Trustees with me before he assumed the role of Executive Director.

Several working committees are already hard at work, like the Family Crisis Fund committee, but there is other work to be done, more committees to form and I’m eager to play a part in strategizing and implementing these initiatives.

I will continue to use the EB Resource platform as a means to keep families in the loop on not only what DebRA is doing or has in the works, but also on what others in the community are working on, dealing with or tackling, as this information becomes available to share. If you have any questions about my new role or your own thoughts on ways the organization can provide additional support, please feel free to email me at leslie.rader@hollisterwoundcare.com. I enjoy hearing from you.