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 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.

The summertime can present some harsh weather conditions for anyone, let alone an EB family. Between the heat and in some parts of the country, frequent rain showers and humidity that can cause extra perspiration, there are many reasons to take precautions in order to protect delicate skin.

We’ve gathered the following tips from a few resources offering tips for keeping your family, especially those with EB, safe from the sun’s harmful rays.

• Try to focus activities either before 10 a.m. or after 4 p.m. wherever possible, as per Dr. Jeff Ashley, M.D., a clinical professor of dermatology at the University of Southern California, interviewed for an Education.com piece on Summer Sun Safety” by Anna Weinstein.
   
• Make an effort to reapply any sunscreen within every two hours since it can easily wear off due to activity or perspiration, says Dr. Ashley.
   
• For sunscreens, a 15 SPF though 30 or higher is preferred, according to Dr. Ashley.
   
• Monitor and limit the intensity of children’s strenuous activity exceeding 15 minutes, as per The American Academy of Pediatrics in their online piece “Summer Safety Tips” on their site HealthyChildren.org. The Academy suggests that at the start of a strenuous exercise program or when traveling in a warmer region, that you should limit the intensity and duration of exercise and gradually increase this during a timeframe of a week to two weeks as the body adjusts to the conditions.
   
• Given the added threat of skin irritation that can result from excessive moisture on the skin and rubbing against clothing during activities, bring extra articles of clothing so your child can easily change in the event of excess perspiration or moisture from a water sport activity, as suggested by the American Academy of Pediatrics.
   
• Keep clothing loose and airy, and hats broad-brimmed, so they offer the most comfort as well as skin coverage to protect direct contact with sun, notes the American Academy of Pediatrics.
   
• Keep kids hydrated! The American Academy of Pediatrics also suggests that parents should make either water or a sports drink available to children every 20 minutes while they are taking part in some form of exercise under the sun.

** Please note that the suggestions offered above are for informational purposes only and are not the opinion of EB Resource. Individuals should always consult their physician regarding any skin or wound care program or other care regimens.

I love good quotes. From time to time, friends and co-workers will pass along some words of wisdom that really resonate and I love nothing more than sharing those bits of advice and truth with the people who need them most.

This week, we thought it might be nice to share some thoughtful words that others have imparted that may help us stay strong when it’s not so easy and feel connected to others when it could fee like we are alone.

We encourage you to share your own favorite quotes and words of wisdom you’ve uncovered along the way here in the comments or on our Facebook page. Be sure to jump into the conversation and don’t forget to attribute them so we know who to thank for the thoughtful advice.

On Strength

• With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt
   
• Life moves on, whether we act as cowards or heroes. Life has no other discipline to impose, if we would realize it, than to accept life unquestioningly. Everything we shut our eyes to, everything we run away from, everything we deny, denigrate or despise, serves to defeat us in the end. What seems nasty, painful, evil, can become a source of beauty, joy, and strength, if faced with an open mind. Every moment is a golden one for him who has the vision to recognize it as such. ~ Henry Miller

On Perseverance and Overcoming Challenge

• Let me tell you the secret that has led me to my goal. My strength lies solely in my tenacity. ~ Louis Pasteur
   
• Problems are not stop signs. They are guidelines. ~ Robert H. Schuller
   
• Joy is of the will which labors, which overcomes obstacles, which knows triumph. ~ William Butler Yeats
   
• Alone we can do so little; together we can do so much. ~ Helen Keller

On Support & Remembrance

• Listening is a magnetic and strange thing, a creative force. The friends who listen to us are the ones we move toward. When we are listened to, it creates us, makes us unfold and expand. ~ Anonymous
   
• The most beautiful things in the world cannot be seen or even touched; they must be felt with the heart. ~ Helen Keller
   
• Surround yourself with people who provide you with support and love and remember to give back as much as you can in return. ~ Karen Kain

Last week was a very busy week in the EB community. Many of the final springtime fundraisers took place including Jogging for Jonah, Butterfly Wishes for Ellie, Love for Lucas and the sixth annual Walk for EB in Cincinnati. As summer approaches, we thought it would be a good time to highlight those events that we have learned about taking place later this year, so far, and hopefully inspire others to coordinate something in their own communities.

If you hear about any other events or are planning one yourself, please send us all of the details. You can email me at leslie.rader@hollisterwoundcare.com. We’ll do our part to help spread the word here at the blog and via Twitter and Facebook.

• Ayden Lee’s 3rd Birthday Party (Niles, OH)
  This special Elmo-themed birthday celebration is being held on Saturday, June 15. The event will take place at Waddell Park, 1000 W. Park Av. Guests are asked to bring a covered dish and drinks, as well as wear the color red in honor of Ayden’s best friend Jaxon who has EB. In lieu of birthday gifts, donations in Jaxon’s name are requested at www.debra.org/donate to benefit families supported through DebRA of America. For more information, click on this event link.
   
• MW Foundation and DebRA Tennis Pro-Am (Queens, NY)
  Details for this sporting event are still being worked out but the scheduled date is Wednesday, August 28 and plans are for West Side Tennis Club, located at 1 Tennis Place, to host the event. Proceeds from this inaugural fundraiser will benefit DebRA of America. For more information, click on this event link and scroll halfway down the page.
   
• 2013 Medtronic Twin Cities Marathon Weekend (Minneapolis, MN)
  The Jackson Gabriel Silver Foundation is currently recruiting for its team as part of a weekend-long array of events Friday through Sunday, October 4-6 including a marathon, 10-mile, 10K and 5K. Team JGSF will be running to support the work of University of Minnesota EB researcher Dr. Jakub Tolar. If you would like take part as a member of the team or get involved in some way, email alevine@jgsf.org. Proceeds will benefit DebRA. For more information about this and other events for the organization, click on this event link.
   
• Frontiers Day Fundraiser (Paris, AR)
  This event coincides with the 33rd Annual Mt. Magazine Frontier Days Festival held in October, featuring its first ever Civil War re-enactment. The EB event will be held Saturday, October 5 at the Logan County Fairgrounds, 301 W. Walnut. There will be a DebRA booth with information about EB and raffles, giveaways and a special silent auction of handcrafted items. You can get additional information about this year’s event or how to donate an item by emailing Cindi Hunter at meadowfairies@gmail.com. Proceeds will benefit DebRA. For more information, click on this event link.

Mother’s Day is just around the corner. This is often a time when children and spouses pull out all the stops to show they care. For moms of children with EB, being a mom carries a whole different set of challenges and stresses.

We thought this would be a great opportunity to offer some supportive suggestions to those who may know an EB mom personally and want to remember them at the holiday. Remembering her with a present is nice but helping her find a way to use the gift and enjoy it may take some extra effort on your part. Remove any guilt she may feel for allocating time to herself by making your present stress-free. Here are some gift ideas that may offer a small lift of spirits and demonstrate you care.

• Offer A Fresh Idea. Consider fresh-baked goods, a fresh fruit arrangement or fresh flowers. All moms (and some dads, too) can find themselves running around as they manage multiple lives’ daily routines, but it can be a wonderful pick-me-up to receive a reminder from a good friend or co-worker to stop for a moment and savor something new, fresh and handpicked.
   
• Encourage Downtime. Everyone knows that devoted moms tend to forget to take a little time for themselves. It’s not always easy to carve out personal time, but perhaps a reminder like a gift card for downloadable music for her mp3 player or downloadable books for an e-reader is a thoughtful way to say ‘it’s okay for you to steal away for a few moments, too.'
   
• Lend a Hand. One thing that can be difficult for EB moms is finding a window of opportunity to step away from the house and run errands. Offer to fill in at a set time on the same day weekly for a month (or more) as a gift that truly keeps on giving.

• Rejuvenate. The idea of a day of pampering whether it’s a much needed replenishing of one’s mind and body at a spa or a simple afternoon getting a manicure may sound attractive to a hard-working mother. To an EB mom, it may be just what she needs in that stressful moment to catch herself from overworking herself so hard she jeopardizes her own health, restfulness and clarity.

• Whisk Away. What better way to step away for a few moments than a night out for dinner and a movie with a good friend or a special afternoon shopping, taking in a local attraction or simply lounging by the community clubhouse pool with a friend and a good book. Chat with a spouse or family member about relieving mom of her responsibilities for a short period of time and snag her for a little fun time away from home to catch up and unwind.

Throughout the year, we like to keep the EB community informed about current clinical research trials in place. According to the U.S. National Institutes of Health (NIH) website, there are presently 12 open EB clinical research trials listed as actively recruiting participants.

One study is not yet recruiting and the status of two studies is currently labeled unknown. Of those open, recruiting EB research studies, eight studies are taking place in the U.S. and four are being led outside of the U.S.

The following briefs highlight general aspects of the U.S. studies currently recruiting. For the latest detailed information about all EB studies open and recruiting here in the U.S. and abroad, please visit the NIH’s Clinical Trials page at the following link: http://clinicaltrials.gov/ct2/results?term=epidermolysis+bullosa&recr=Open.

The following is not an endorsement but merely a brief summary of the EB clinical trials available at this time and is for informational purposes only. You should visit the relevant link below for more information. You should also consult your health care professional and thoroughly understand the potential risks involved with a clinical trial before you participate in any clinical trial. We take no responsibility for any results or outcomes associated with the following clinical trials.

• Gene Transfer for Recessive Dystrophic Epidermolysis Bullosa. Dr. Alfred T. Lane of Stanford University’s School of Medicine leads this study first launched in December 2010. The trial is being conducted in collaboration with the National Institute of Arthritis and Musculoskeletal and Skin Diseases. This study involves researchers creating a graft of the participant’s skin that has been genetically engineered in a culture, in an attempt to correct its cellular protein deficiency causing RDEB. Investigators then transplant the “corrected” cells back onto the patient’s skin. For more information about this study, click here to link to ClinicalTrials.gov.
   
• Stem Cell Transplant for Epidermolysis Bullosa. This study by the Masonic Cancer Center at the University of Minnesota, is attempting to test its primary hypothesis that the infusion of bone marrow or umbilical cord blood from a healthy donor will correct certain deficiencies and reduce the skin fragility characteristic of several severe forms of EB. EB patients are being treated with a combination of a chemotherapy regimen, a bone marrow or umbilical cord blood stem cell transplant and a mesenchymal stem cell transplant. For more information about this study, click here to link to ClinicalTrials.gov.
   
• Characteristics of Patients with Dystrophic Epidermolysis Bullosa. In addition to its gene transfer study for RDEB patients, Stanford University is conducting a screening of subjects with DEB to evaluate the characteristics of these patients, who often develop severely painful blistering and open wounds, and examine their cells as a means to support the development of future therapies. For more information about this study, click here to link to ClinicalTrials.gov.
   
• A Study of the Efficacy and Safety of ABH001 in the Treatment of Patients with Epidermolysis Bullosa Who Have Wounds That Are Not Healing. Launched in December 2012, this trial by Shire Regenerative Medicine will attempt to evaluate the efficacy and safety of ABH001 for treating EB patients with wounds that are not healing. The hypothesis being tested is that ABH001 may initiate and continue the wound healing process for these particular EB patients. Currently, a handful of sites in the U.S. are recruiting for this study including UCSD Children’s Hospital in San Diego, Northwestern University in Chicago and Virginia Clinical Research in Norfolk, Va. For more information about this study, click here to link to ClinicalTrials.gov.
   
• Treatment of Chronic and Non-Chronic Wounds in Patients with Recessive Dystrophic Epidermolysis Bullosa Using Helicoll Collagen Dressings Versus Standard Care. This trial is being led by Dr. Lane at Stanford University and launched last October. Its purpose is to test the effectiveness of a specific collagen wound dressing (Helicoll) against traditional wound dressing for treating chronic and no-chronic wounds of RDEB patients. For more information about this study, click here to link to ClinicalTrials.gov.
   
• Characteristics of Adult Patients with Recessive Dystrophic Epidermolysis Bullosa. Stanford University is also conducting a screening of RDEB patients similar to its Dystrophic EB trial, in particular those adults who survive with the diagnosis into adulthood, to evaluate their characteristics. For more information about this study, click here to link to ClinicalTrials.gov.
   
• Efficacy of Granulocyte Colony Stimulating Factor in Patients with Dystrophic Epidermolysis Bullosa. This feasibility study from Vanderbilt University in Nashville, TN launched in February 2012 and attempts to measure the effectiveness of Granulocyte Colony Stimulating Factor treatment for DEB patients in a seven day course of treatment. Follow-up with the patients will take place after seven days and 30 days following discontinuation of the drug. For more information about this study, click here to link to ClinicalTrials.gov.
   
• Grafting of Epidermolysis Bullosa Wounds Using Cultured Revertant Autologous Keratinocytes. This is another study being led by Dr. Lane at Stanford that launched in fall 2011. Revertant Mosaicism means that a patient has two different genetically different cell populations due to spontaneous mutations, and for this study, the research team is attempting to use such circumstances to treat a patient with his or her own normal, non-fragile skin patches. That is, the team will try to culture cells from these areas the EB patients’ skin to create grafts for the wounded areas of the same patient. For more information about this study, click here to link to ClinicalTrials.gov.

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.

For families living with epidermolysis bullosa, the pains that accompany it far surpass the physical and emotional impact. EB takes a tremendous toll financially on the family, too. This may not be something that others just learning about the disease may realize, so it’s our responsibility as EB advocates out in the community to share the full story.

Economically, EB hits us as families from every possible direction – medical bills, additional caregiver support, daily wound care supplies, the need to purchase special clothing or EB-friendly accessories or toiletries as opposed to what’s sitting on the clearance table at the local department store.

There are many things an EB family cannot do automatically or without careful forethought to ensure the safety and comfort of the person with EB. That inability to simply act on the cheapest alternative can be costly, whether you’re seeking out hard-to-find garments without buttons, elastic and scratchy zippers or trying to find special footwear.

What would you estimate your family pays in wound care materials on a monthly basis? For many of the families I talk to in the community, this figure can range anywhere from $5,000 to $10,000, or greater. Medical bills can drain families of thousands of dollars over the course of several months or a year. The impact that figures like these can take on a family’s budget is something that even those who may not fully comprehend EB could identify with.

Those of us directly faced with EB or even those who know of a neighboring family affected have an opportunity to educate others not only on the physical and emotional scars EB leaves, but the economic devastation the skin disorder inflicts. As you coordinate EB awareness events and fundraisers, find ways that you can convey this message, as well, to those who are first learning about EB.

Consider sharing this kind of information with other families during your educational process. The supporters you are seeking will already understand the costs associated with raising a family, but are more likely to empathize when they see the full impact EB takes on a family’s entire well-being.