A Revamp of Hollister Online

 

Many of the parents I speak with are always on the lookout for the latest information about wound care products available to address their families’ needs. Understandably, they want to find whatever supplies will offer as much physical comfort as possible to their loved one facing EB. I often direct people to the Hollister Wound Care website to get additional information about wound care.

 

Recently, Hollister revamped its website (hollisterwoundcare.com) so I encourage members of our community to stop by should they have questions about any of Hollister’s EB-friendly products, such as its various Restore dressings featuring TRIACT technology, Endoform Dermal Template Dressing, as well as Restore Wound Cleanser and Restore DimethiCreme Skin Protectant. One of Hollister’s newest products that also may be of interest to EB families is the TRIACT Foam Dressing with Silicone Border, which can be another alternative for those people currently using foams with a silicone border or who already know they can tolerate border products.

 

The Hollister site features a special section devoted to offering educational materials called the Wound & Skin Care Learning Center, which includes videos and educational booklets to better demonstrate Hollister’s various product lines. The website also includes Educational Resources for Healthcare Professionals. This section is designed to offer additional support to those in the medical field who wish to stay as current as possible about the latest wound care technology and gain a greater understanding of the materials their patients and their caregivers may be using on a day-to-day basis.

 

If you have any questions at all about where to locate information on the website or about any of Hollister Wound Care’s EB-friendly product lines, please don’t hesitate to reach out to me with your questions. You can email me at leslie.rader@hollisterwoundcare.com. I’m happy to assist or direct you to the best person to help.

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.

Looking Ahead to the debra Care Conference

What is it like to be a parent of a child diagnosed with EB? How are lives changed when family and friends become caregivers? What does the future hold for EB families in terms of treatments and any possibility of a cure for EB? It may be a small group of us who know these questions all too well or ponder them ourselves as we strive to look forward, but for those who live with EB every day, we quickly learn that the more information we can gather, the better our family and tight circle of friends and co-workers can tackle it.

 

Every other year, debra of America hosts a comprehensive forum of parents, caregivers, physicians, nurses, researchers, medical suppliers and other individuals and organizations focused on the impact of epidermolysis bullosa. This year, debra has scheduled its latest debra Care Conference (formerly known as the Patient Care Conference) for Sunday, July 24 through Wednesday, July 27, 2016 in Grapevine, Tex. at the Gaylord Texan Resort and Convention Center. If you are part of an EB family or invested in doing more for the cause, this can be a valuable experience and one I highly recommend looking into attending.

 

 

Information is regularly being updated on the debra website, so be sure to check back frequently for agenda and speaker details as they become available but here's what you should know now in order to register.

 

  • The hotel is located just outside of Dallas and if you've ever visited a Gaylord Resort before, then you know it is a completely awe-inspiring setting, a totally enclosed space beautifully decorated and populated by lush greenery and expansive, fun areas for families to explore without worry of the dangers of sun exposure or outside elements. Gaylord Resorts continue to be the ideal locale for this event, perfect for EB families looking out for those with fragile skin. You can learn more about this particular resort by clicking here.
     
  • As in the past, the organizers are doing their best to make available to attendees, primarily EB families, access to leading clinical researchers to share the latest about their progress in the field and representing some of the top facilities in the world with focused EB trials and treatment development underway. Attendees will get to ask questions and learn more from these experts as well as from each other as some relevant conversations are led by a variety of knowledgeable guest speakers.
     
  • If the information EB families take away with them and the spectacular resort experience weren't enough, probably the greatest part of all about the conference is the opportunity to connect with other families going through similar experiences. I've had so many people tell me that they've met some of their best friends and supporters in the EB community while attending a past conference. Our families may be spread out across the country, but at this special event, we all come together under one very big roof and get to talk, learn, play and share in a meaningful and sometimes life-changing way.Members of the EB community have shared with me afterward how this experience helped them truly realize they are not alone in their struggles. That could be the most valuable benefit of attending right there!
     
  • Registration is officially open now, so for those who have EB or with a member of the immediate household diagnosed with it, click here to register. All other individuals interested in attending may click here for more information.
     
  • If you're still not certain you want to attend, maybe stop by the site's FAQs and resolve any concerns or confusion. Also, I find it helpful to get a glimpse of past events sometimes when I'm making a decision on attending a conference. You can see links from the past three conferences at the debra site, as well. Click here for a look at the 2014 Conference.
     
  • This year, the conference organizers are launching something new, the DCC Express Yourself Challenge, open to both those planning to attend the conference and others who won't be able to be there in person. Debra wants to know people's feelings about being part of the EB community and their thoughts on past events, as well as expectations for this year's conference from those who will be attending. Click here to read up on how you can take part in the DCC Express Yourself Challenge!

 

The debra Care Conference is a unique experience that unites a diverse community in a way that encourages collaboration, interaction and education. I hope that you'll be able to join us. And if you are considering, please act soon. Each year, this event fills up quickly, and I wouldn't want you to miss out on this great opportunity. For more information about the site, go to the conference's main web page for details and contacts, should you have any other questions.

 

I hope to see you at the 2016 DCC! If you see me there, please stop by and say hello.

 

Spreading the Word for Spring and Summer

With spring already here and summer just around the corner, we thought it would be a good time to share information about upcoming events or fundraising campaigns that debra of America and other EB-focused organizations have planned during that time. If you know of others, let us know. You can email me at leslie.rader@hollister.com.

 

 

 

  • All in for a Cure (NYC, NY) – Spend an evening trying your hand (or several) of Texas Hold’em Wednesday, April 13 at the Penn Club of New York as guests compete for prizes throughout the night and benefit the EB Research Partnership. The evening includes appetizers, cocktails, a light dinner and dessert. For more information and to buy tickets, click here.

  • 2nd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, April 16 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. To find out how you can show your support and to get more event details, click here.

  • Butterflies Keep Flying Book Launch Party and Fundraiser (Richmond, VA) – Come out to join Ali Pfautz, The Story Lady, when she brings her book Butterflies Keep Flying to the Barnes & Noble at Chesterfield Towne Center (11500 Midlothian Turnpike) Saturday, April 16 for a book launch and special readings at 11 a.m., 1 p.m. and 3 p.m. A percentage of sales will be donated to debra of America. For more information, click here.
  • 5th Annual Jogging for Jonah (Winston-Salem, NC) – This event to be held Saturday, May 14 at Pinedale Christian Church offers activities for the whole family including a 5K chip-timed race for the serious runners, a one-mile Fun Run for everyone else, kids’ activities, inflatables, face painting, raffles and more. All proceeds will be donated to debra of America. For more information, click here.
  • 2nd Annual dash4dEBra (Lake Forest, IL) – Lake Forest Academy serves as host Sunday, May 22 at this fundraiser race. Proceeds from the day support debra’s many programs providing medical supplies to families and patient access to specialists, as well as raising funds to support research efforts. For more information, click here.
  • 10th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Take part in this signature fundraiser event in honor of Ellie Tavani which raised nearly $50,000 last year for debra of America. This year’s event will be held at The Park Tavern Thursday, May 25. For more information, click here.
  • 2016 debra Care Conference (Grapevine, TX) – EB families are encouraged to sign up soon for this special event held every two years, and this year, being hosted by the Gaylord Texan Resort & Convention Center just outside of Dallas Sunday, July 24 through Wednesday, July 27. For more information and to register, click here.
  • 3rd Annual Knoxville 5K (Knoxville, TN) – Those who’d like to take part in a fundraiser to support EB families and who also enjoy a good race can lace up the sneakers Saturday, Aug. 16 for this race at Victor Ashe Park in honor of an area 2-year-old living with EB. The race starts at 8:30 a.m. with proceeds to benefit debra of America. For more information and to register, click here.

Why I Heart This Community

Who doesn't love Valentine's Day? Flowers, romance, candy! This weekend, sweethearts and children alike will be delighting in the holiday and just the same, in our house, I have a hunch there will be plenty of heart stickers and chocolate hearts in high demand. We never tire of fun, sweet holiday traditions like that.

 

 

 

 

 

 

 

 

 

Remember how wonderful it felt as a child to receive a Valentine from a classmate or the little friend who lived next door? What I do appreciate about this time of year is that it urges us to express what we feel about others. Too often we don't let people know how much we appreciate them, so what better time is there for us to 'share the love' too?

I 'heart' the EB community, and it like all communities is dynamic. The makeup of its membership is ever-changing as more and more families are impacted by the disease, but as we grow, I have been touched by the show of compassion and welcoming that other families have shown in trying to educate new families as well as those outside the EB community.

We all come from different backgrounds, belief systems and experiences that have made us who we are and for such a diverse group of people to come together and help one another, it is truly a beautiful thing to witness. I've been right there watching and on some occasions, initiating conversations to begin this important dialogue.

I 'heart' the dedicated people who make up the various EB organizations focused on defined missions, whether it is raising funds for advanced research or better EB treatments, growing public awareness and involvement, lobbying for change to existing insurance or regulatory policies that might challenge EB families financially, or supporting members in the community directly with wound care supplies, clinical or caregiving assistance, or other support resources. We each have our own reasons for being here and none supersedes another. But even with our own objectives as public voices and fundraising leaders, we can operate individually and still remind ourselves of our responsibility to support one another. After all, that supports the EB community and its members are the whole reason we do what we do every day.

I 'heart' the possibilities. There are new developments happening all the time in the clinical labs where smart, forward-thinking scientists are finding new avenues to explore to give EB families hope of a cure or improved treatments. We haven't begun to scratch the surface of what all of us, as separate EB organizations and members of the EB community and their families and friends, can do together but I have faith that somewhere in our missions we will find a way to make our collective message louder and clearer to the rest of the world about EB and the toll it takes on a patient and on his or her family.

I embrace this community for what it has done for me and my family, and for all that I and others can do to support other families. We still have much to learn from each other and so many more ways that we can positively touch each other's lives. And that warms my heart most of all.

Happy Valentine's Day weekend to you.

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

Where We’ve Been, Where We’re Headed

Recently, I attended this year’s annual benefit fundraiser for DebRA of America hosted by the Solomon R. Guggenheim Museum in New York City. Between the elegant setting and the graceful ballet moves of Julie Kent, the event was beautiful, and it was wonderful to see so many people come out in support of a shared goal — to raise funds to provide free supportive programs and services to families impacted by EB.

This year has seen great successes for both raising funds and raising awareness for many of the organizations who work closely with EB families, the medical community and researchers. Now many of us shift our attention to finishing up our year and getting planning underway for efforts to achieve our 2016 goals.

Many of us will continue to do what we can to make whatever resources are critical to EB families more accessible, and that includes information. One of the big events to look forward to next year is the DebRA Care Conference. This conference has a new name which DebRA hosts and invites EB families from across the U.S. to attend. It is a great opportunity for families to interact and learn from one another and for everyone to be brought up to speed about the latest treatments and clinical research outcomes. If your EB family has never been able to attend, I urge you to look into attending this year’s event in Grapevine, Texas. We will be sharing more details as they become available.

Along the way in 2015, we were introduced to new faces and voices coming out in support of those directly affected by EB — some famous and others unknown until now. Each time a public figure lends their fame to attract interest to an event or campaign, or a private individual or family invites others to take a closer glimpse into their lives, we move forward: forward in helping others better understand and in starting to break down any misconceptions that might emerge about the disease.

During the first few months of the New Year, we will be sharing all that we can about ways you can get involved in awareness events and the fundraisers we are aware of and as always, we hope to get more interactive conversation going between members of the EB community. If you have ideas for upcoming blogs or other features you would like to see on EB Resource’s blog or social media pages, please contact me at leslie.rader@hollisterwoundcare.com.

From my family to yours, may you have a beautiful holiday season and a bright new year.