A new year means new opportunities for those out there in the EB community to make a difference to help others. While sometimes it may mean launching a new community event or sharing your story out in the media, there are other ways that EB patients and their families are being helped, simply by people following their hearts and finding their own unique ways to make a difference. This month, we share our appreciation for unique EB advocates in a position to change the lives of others, directly or indirectly, in a positive way.

• The American Indian Health Services Clinic of Santa Barbara, CA
  This facility recently funded a documentary by CoCreative Media, The Miguel Garcia Story, which spotlights the life of a young man living with EB whom the clinic has assisted for his entire life. Not only is the piece inspiring to anyone trying to overcome obstacles of any kind, but it also serves a very important purpose: shedding light on what is still a little-known disease to many. Every opportunity to create a storytelling tool for others to use is helpful for the entire EB community, because as people become more enlightened, they become less frightened or apathetic about what they don’t know or understand. This leads to them having a greater chance of expressing a desire to help however they can. So we commend the clinic for investing in not only what is an inspirational and sweet story but a significant, up-close look at what life is like for someone living with EB.

   

• Faith Daniels
  This former TV news anchor recently addressed a philanthropy-focused group in Vero Beach, Fla., sharing her admiration for its collaborative effort and was quoted in a local article as saying, “You've shown you can make such a difference when everyone joins together." Not too long ago, Daniels herself took a step aside from an established journalism career to re-evaluate her own life-long passions. Along with a desire for motherhood, she decided to pursue philanthropic interests, which included becoming president of the Board of Trustees for DebRA of America. We appreciate any advocate who discovers her calling by trusting her instincts and following her heart.

• The University of Minnesota, Department of Genetics, Cell Biology and Development
  Recently, the school formally announced that this department would be offering its stem cells course to undergrads for the first time in spring 2012. Up until now, this has only been available for graduate students. In a recent article, the director for the university’s Stem Cell Institute noted that stem cell research continues to be popular field of study and that the university currently leads 50 stem cell research programs. Among these is a study to find effective methods for treating EB through the use of adult stem cells from umbilical cord blood and bone marrow donations. We applaud any move to continue adding a greater number of educated, interested scientists into the medical field to conduct research, such as this study. It just may put us a few steps closer to a cure or improved treatment for EB patients.

So kudos to those who support EB patients and families and who find their own ways to make a difference in others’ lives.

Planning or hosting a fundraiser is never easy. Over the course of the past two years, we’ve tried to offer some helpful tips on a variety of fundraiser topics, such as developing awareness campaigns, planning a fundraiser, and coming up with fundraiser ideas. We’ve also tried to spotlight specific EB awareness events and fundraisers that were successful and feature direct thoughts from those behind them, including Kristy and David Kissell, founders for Walk for EB, and St. Anne Catholic School in Tomball, Tex.

But as those who begin planning their EB function quickly learn, there are likely to be a few challenges in store, so we wanted to make you aware of these if you haven’t planned your first such event and offer some pointers for overcoming them.

• Lack of familiarity with the cause. You may face some difficulty initially garnering support for hosting an event or contributing to an EB-focused organization – more so than you might when raising funds for an after-school program or a more commonly known nonprofit or disease, such as the Salvation Army or Susan G. Komen Race for the Cure for breast cancer. Be sure to bring to the conversation all of the necessary facts to discuss accurately and fully the topic of epidermolysis bullosa so that you can properly educate the individual or group to whom you are appealing. Also, arm yourself with the necessary background information about the organization from which you are hoping to raise funds.
   
• Concern with the rarity of the disease. Don’t be alarmed if you experience some resistance to championing your cause because of the disease’s smaller ratio of individuals impacted in comparison to more widely known afflictions, such as cancer or diabetes. It is important to focus on the severity of the illness and how it is affecting those diagnosed with EB – both the individuals and their families. Also, it would be helpful to offer recent clinical research information so those you are approaching can understand that great strides are in progress and these programs are in need of additional support to continue their work.
   
• A visibly disturbed reaction to the “face” of EB and its effects on those diagnosed. We have witnessed much debate on Facebook regarding the practice of sharing graphic photos depicting children or adults with EB. People have questioned how much is too much and how much is necessary to communicate to others what those living with it know all too well: that EB takes a tremendous physical toll on those with the debilitating skin disease. As you approach others about teaming up for a fundraiser, it may feel necessary to paint a vivid and true picture of what EB looks like every day. However, you will also want to keep in mind that other people may have strong reactions to the painful and heart-wrenching images of life with EB. Roll out such images with consideration and forethought. After all, your ultimate objective is to raise awareness and funding for a cause you believe in greatly, so being sensitive and aware of a possibly strong response is just being proactive.
   
• Lack of built-in interest or a reliable volunteer/participant base. Because EB is not a widely known disease, you will not have the quick, easy access to dozens of volunteers who want to hop on board to help out for your upcoming fundraiser. You can anticipate a fair amount of promotion on your part and recruiting of those close to you to – not only to help get the word out about the event but to recruit others to join in the effort. This should not dissuade you from planning your first EB Walk, special fundraiser promotion, or other campaign. Use those supportive resources in your inner circle – friends, family, co-workers, neighbors, and students and their families – to be an important part of your team. They can help you grow interest in making EB not only a cause that you and your team believe in, but also one that the entire community can believe in and want to support, too!

We invite others who have planned their own EB awareness events and fundraisers to chime in with their own thoughts and experiences and the types of obstacles people may encounter. What are some lessons you learned along the way that you can share with others to prepare them for challenges to come?

In the past few years, we’ve noticed a growing number of sites and tools that allow people to set up online fundraisers as individuals, school clubs and community groups. We think one of the most innovative and selfless ways to use such tools is as an alternative to traditional birthday celebrations — taking what otherwise would be a special occasion personally and making it beneficial to others instead.

So what are some things that you, a friend or family member could do to benefit a favorite EB-focused organization when a birthday arrives? Here are some ideas! (And be sure to pass along to some of your fellow co-workers, neighbors or classmates’ parents.)

• Set up a “cause” page through Causes.com to suggest to others they donate to a good cause in honor of your birthday. Use the opportunity to encourage them to support a favorite EB-focused nonprofit, and if it isn’t registered, inquire about how to make this happen.
   
• Post on your Facebook page that you appreciate the good wishes and e-cards but in lieu of gifts, you’d prefer they give to your favorite EB charity.
   
• Contact your favorite local restaurant about holding your birthday celebration with family and friends at their place and ask if they would be willing to donate a portion of the evening’s sales to your EB nonprofit of choice.
   
• Host a “party-with-a-cause” birthday celebration and ask guests to bring donations or items for EB families based on an EB nonprofit’s wish list of frequently needed supplies.
   
• Use a unique online fundraising tool, MyDunkTank.com, to launch a special birthday contest or promotion with some fun and flair. Last February, we blogged part 2 of our chat with EB Friends forum creator Chris “Pez” Matthai during which he discussed his own “I’ll Do Anything for EB Awareness” Challenge that he launched during EB Awareness Month 2010. In that campaign, whichever proposed “challenge” raised the most money, Chris would have to perform it, from dressing as a clown and roaming the streets of NYC to singing “I’m a Little Teapot” throughout Central Park (the latter which won, by the way). Get creative and have fun with your special day and let your friends and family have a little fun at your expense, all for a good cause!

Have you found some creative ways to transform a birthday or other important occasion into an effective EB fundraiser? We’d love to hear from you with your own ideas and previous event experiences. Just email us at leslie.rader@hollisterwoundcare.com, and if we get enough reader suggestions, we’ll feature a follow-up blog on the subject later this winter.

Last weekend, we ushered in a new year — and we are still reminding ourselves daily to watch those dates – January 2012, not January 2011. We’ll get the hang of it soon enough.

A new year is a great time to assess what you’re doing and plan now for those goals and milestones you want to achieve, and we think of the EB Resource in this same way. We do not take what we do lightly, and we want this communication tool and forum (comprised of the EB Resource blog and its respective Facebook and Twitter communities) to be the most beneficial it can be for its members.

This next year promises to be an exciting one for all of us involved in raising EB awareness and supporting individuals and their families. DebRA’s Patient Care Conference returns to gather families and offer helpful information and support, this time in sunny Orlando, Florida, which should be one of our most fun family destination host cities yet. And as we anticipate that this will be the year that our close-knit online community grows beyond 1,000 members, we wanted to take this time to encourage you to share with us ways that we can improve and expand this wonderful conversation. So tell us: here on the blog, on Facebook, Twitter and via email at leslie.rader@hollisterwoundcare.com. 

• What topics have we done a really good job covering and offering links or other sources for additional information?
   
• What topics are of interest to you for which we’ve only touched the surface?
   
• What are some questions you have that you would like the appropriate experts to weigh in on?
   
• Who else do you want to hear from in blogs and interviews?
   
• What other ways could we present useful tools and information to support EB patients and their families?
   
• What would you like to do to get more personally involved with the EB Resource community in the new year?

 We look forward to 2012 together, and your feedback will help make our community all that it can be to support one another.

We’re just days away from 2012, and we always love using this time to reflect on the good things the current year brought to us – maybe it was new people, a fresh perspective on a subject or added knowledge or activities that helped us learn and grow in some way or another.

What are you celebrating at year’s end? A new job? A victory for the family? Maybe it’s not an obvious piece of “good news” but more about a new understanding or acceptance of something in your life. Peace of mind and resolution are always meaningful causes to celebrate in our book!

So we want to take this time to say thank you to everybody who in some way has contributed to EB Resource this year– whether it was contributing a personal story or information for one of our blogs, becoming an active part of the Facebook community or re-tweeting our updates on Twitter. Let’s toast the old year as we usher in a new one.

• More community growth. We watched our EB Resource Facebook community grow yet again from nearly 800 members at the start of the year to just under 1,000! Many of you have introduced what we’re doing to friends, family and co-workers who have since friended us, too, and support the community in their own unique way, and for that, we thank you.
   
• Steady interaction. It’s been so exciting to be a part of a relevant, ongoing conversation that has shown no signs of slowing down, and one with so many caring people lending their voices. Sometimes we launched the topics and other times, members posed important subjects for discussion. This has been an organic process from the start, and we can’t wait to see new ways we’ll connect with one another during the new year.
   
• More and more voices in the blog community. Each year, we see a growing number of voices join the blogging movement. This is certainly not a new avenue for expression but one that can be particularly timely and critical in our community, with so little information or discussion available in mainstream media about EB. We won’t begin to take credit for encouraging more bloggers to open up their WordPress and Blogger accounts, but we do feel an itsy-bitsy sense of pride that some of our EB Resource Facebook friends are among those who’ve launched these new blogs. So we hope we’ve at least been influential in your decision and will continue to call on others to speak up if they have something to say.
   
• Even more fundraisers for EB causes. As great organizations like EBMRF, DebRA, the Butterfly Fund, PUCK and others find opportunities to create larger-scale events and campaigns, we are beginning to see more and more families and communities at a grass roots level launch their own community-based awareness events and fundraisers. This is wonderful news, because it starts at the neighborhood level, helping others become familiar with what EB is, what it looks like, what it means for those impacted and how others can help in basic ways to make a difference. So kudos to those who took the leap and launched their own first annual event this year. Keep us in the loop about your second annual events in 2012 so we can help you spread the word!
   
• The love Tweets. Thank you again, everybody, for re-tweeting and spreading the word during our recent second annual EB Awareness Tweet-a-thon. Hollister Wound Care was able to donate $2,500 to DebRA of America as a result of those who pitched in, taking the time and care to share messages with their own followers. Just think about how many new people were introduced to the topic for the first time because of your interest and energy. We can’t thank you enough!

As you get the funny-looking hats, party horns and champagne flutes ready for the new year, take the time to reflect on your own personal victories and challenges, and where you’re headed. And we’ll look forward to connecting with you in 2012!

We chatted last week about the busy pace at this time of year and the challenges that can consume us as we try to find the perfect present. It got us to thinking a little bit about what we do here in the EB Resource blog and Facebook community. In our own unique way, we bring special gifts to the conversation all the time, and they can serve a very important purpose, though we may not even realize what we’re giving.

Are you the fact-checker or examiner in the community? When others pose a theory or present information that you may know firsthand is incomplete or even inaccurate, do you take the time to update others to set the record straight? Sometimes we may not feel we have time to do this, but by taking just a few moments, we can help others avoid making a costly consumer decision or heading down a fruitless road.

Are you the cheerleader or supporter? When you sense a member in distress or needing encouragement, are you the first one in the forum to offer a little light in what could be a dark moment? While it’s important to be honest and realistic about what may take place during daily care or a clinical research trial, the unfamiliar can be frightening sometimes. It’s good to know that others are there to pick you up when you may not feel you have the energy to take that next step, and sometimes just one supportive word can be that extra boost you need.

Are you the notifier or igniter? For instance if a major insurance or healthcare discussion on Capitol Hill has begun that could impact EB families directly, are you usually the person who brings up the subject in the forum to get people talking about it and taking action in some form or another? We need gifts like yours to motivate us and remind us that we each have an important power of our own: the power to speak up and make ourselves heard.

Are you the informer or teacher? When you pick up some new handy strategy for managing a wound care issue, are you on the blogs or at the boards, spreading the word immediately? Or if you try a new dressing and have success, do you let others know as soon as you can what new product you used? We try to read all that we can on the subject of epidermolysis bullosa and wound care, but we’ll never know everything, yet through the incredible gift of sharing information and committing to educating ourselves and others in the process, we can help support each of our goals of becoming a better patient, caregiver and advocate in the EB community.

So what gifts do you bring to this conversation and to your relationships, in general – whether it’s in the EB community or in your own important circle of friends and family? Embrace the role you so diligently fulfill and continue to bring your valuable presents to our daily gathering.

And may you and your family enjoy peace and good cheer this holiday season!

On a weekly and sometimes daily basis, I talk with people and their families impacted by EB. There’s my work through Hollister Wound Care, which frequently intersects with existing and new customers, and my role assisting DebRA by working with new families to get them off the ground with preliminary information and initial wound care supplies. But for me, this mission to support those whose lives are changed by a single diagnosis is personal, and one for which my whole family relates, as well. Yet throughout these many communications and interactions, I continue to be amazed at people’s strength and sincerity to help each other across the EB community.

Many of us may currently find ourselves caught up in annual holiday traditions that may leave us fretting about the little things as we battle it out in shopping aisles, traffic jams and overflowing parking lots. But in our unique community, we are reminded every day of what truly matters, and there are special people who recognize the potential power of one single outstretched hand. We might witness it through the response to a question posed in an EB Friends forum, the sharing of feedback about a so-called “EB-friendly” product on platforms like Facebook or Twitter, or the honest and frank revelations through a day-in-the-life account of a patient or family coping with EB through the words of a mommy blogger or through video footage captured and uploaded on a personal YouTube channel.

This is a time of year when we can get lost in the ultimately insignificant details or we can embrace the generosity surrounding us, and we see this gracious spirit demonstrated regularly on the EB Resource Facebook page every day. We may pose a question to the community, asking for personal experience and insight, and perhaps those trained to be caregivers and sources of valuable clinical information chime in or parents presently trying to manage the day-to-day stresses of living with EB offer their input. For others who wish to continue being a part of the community, it can be difficult but feel necessary to remain part of the conversation to help others as they may need to set aside their own pain of a lost loved one for the sole purpose of helping another individual or family navigate unfamiliar territory.

The spirit of the EB community is a wonderful lesson in human compassion, and what better time to reflect on this spirit and appreciate it for its honesty and relevance than during what otherwise is likely to be the most hectic time of year. We could use this important reminder right about now. So it’s okay if you don’t find that in-demand e-reader everyone has been talking about or locate the absolutely best pair of jeans on the planet for the loved one who has been hounding you for them this holiday season. It may seem necessary and important, but we know that with community, compassion and the power of sharing, we have all that we need this holiday season and it’s across the various platforms where friendly faces and encouraging voices touched by EB connect.

We don’t need to use the word “friend” loosely in this Facebook community. And as we grow, we only become stronger.

Good luck out there weeding through the daily details – then, when you can, come back to join our very real and rewarding conversation. All of us will be here for you. You can count on that.

The holiday season is here, and we can’t believe how quickly it seemed to arrive. But we didn’t want to let the season sneak by without sharing with the rest of the community some shopping links we’ve learned about that invite consumers to tackle their gift list while benefiting EB families at the same time.

The following links are provided as a courtesy to the EB Resource community for informational purposes only. None of these links featured here represent any kind of content or product endorsement or warranty by EB Resource.

• For those planning to prepare and mail out cards for the holidays, consider an innovative option that combines celebrity, creativity and a good cause. Tiny Prints offers a line of Celebrity Cards, featuring cards designed by such notable personalities as Jennifer Aniston, Eva Longoria and Zoe Saldana, with proceeds from each sale benefiting the Epidermolysis Bullosa Medical Research Foundation (EBMRF). So the annual tradition of sending out holiday greetings to friends and family members can support EB research at the same time!
   
• If you were planning to buy a new Kindle this holiday season, consider purchasing it at Amazon.com. By clicking on this specific link, Amazon.com will donate a portion of proceeds from the sale to DebRA of America.
   
• And here’s another innovative musically tinged way to support EB. Planning on buying a friend or family member an MP3 player for a gift? Download the song “Butterfly Child” by Rob Duskey & Friends at Amazon.com or iTunes onto their new player, and each download supports the artists’ fundraising for EB research.
   
• Looking to buy some beautiful bling for someone special? EBMRF has a link to Satya Jewelry at its online shop, and DebRA features a beautiful butterfly bracelet as well as a butterfly pin at its website’s merchandise page, with each purchase benefiting their respective referring organizations.
   
• EBMRF has also partnered with the NuSkin products skin care line, so next time you’re looking for an invigorating skin cream, consider helping EB at the same time with purchases of three of their products (Firewalker, IceDancer and Glacial Marine Mud).

These are just a few ideas we have found. Do you know of some others? If so, please share them here with the rest of the community.

* The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.

Hollister Wound Care recently announced the arrival of Restore Contact Layer FLEX dressing to its TRIACT Technology family of products. The new ultra-conformable contact layer features more flexible mesh and a gentle tack intended to improve the ability of the dressing to stay in place, especially in hard-to-wrap areas.

TRIACT Technology is a scientific formulation used in select Restore wound care dressings. These advanced dressings are designed to form an ideal moist wound-healing environment, with Restore Contact Layer FLEX dressings frequently being used for the treatment of many chronic and acute wounds, including wounds associated with EB.

Restore Contact Layer FLEX dressings have the following benefits:

• Non-Adherent
  Virtually pain-free dressing removal for enhanced patient comfort.
   
• Maintains a Moist Wound Interface
  Forms a gel in the presence of exudate.
   
• Ultra-Flexible
  Comfortable for the patient during application and while in place.
   
• Highly Conformable
  Can be shaped to fit contours of deep or irregular wounds and in difficult anatomical locations.
   
• Easy to Apply
  Gentle tack of dressing helps keep it in place over the wound.

In a clinical study of use of a new flexible lipidocolloid dressing on acute wounds and chronic wounds cited by S. Meaume in the Journal of Wound Care (April 2010), Restore Contact Layer FLEX dressing was compared to the original Restore Contact Layer dressing. In most cases, Restore Contact Layer FLEX dressing was reported to be: more conformable, easier to apply on awkward locations, and more comfortable.

Anyone who has watched a child trying to cope with the pain of EB knows how heart-wrenching it can be. Wound dressings like Restore Contact Layer FLEX dressing with TRIACT Technology have been designed to offer the same benefits of the original Restore Contact Layer dressings – non-adherence for virtually pain-free removal – but with a flexible mesh that offers additional conformability and comfort and a gentle tack to help secure the dressing in place. It is ideal for use on wounds with fragile surrounding skin, and is therefore a good choice for EB families and caregivers.

If you would like more information about Restore Contact Layer FLEX dressing, please contact me at leslie.rader@hollisterwoundcare.com.

Sources:
EB Dressing Products, Hollister Wound Care
Meaume, S., et al, Use of a new, flexible lipidocolloid dressing on acute wounds and chronic wounds: results of a clinical study; J of Wound Care, 20(4), April 2010, 180, 182-185.

Related Posts:
What to Know When Using Restore® Foam Dressings
What to Know When Using Restore® Contact Layer Dressings
What to Know When Using Restore® Contact Layer Dressings with Silver
Using Restore© Calcium Alginate Dressings
What to Know When Using Restore® Duo Dressings
Using Restore® and Restore Lite Foam Dressings

At this time of year, many of us reflect on that for which we are most grateful. For some EB patients and their families going through an especially troubling time, this can be difficult. To members of our community, let’s use this opportunity to show gratitude for the advice, education and support each of us has been fortunate to receive from other families, those care specialists who have sincerely invested themselves in our lives, and groups like DebRA, EBMRF, EB Friends and more. How can we do that? We can pay it forward by sharing that knowledge and support with others now facing similar challenges.

• Share your story. Look for any and every opportunity to reach out to other EB patients and their families through your words. Whether it’s through posting a blog, participating in news articles, promoting local or national awareness campaigns or maybe writing a book, speak up. If you decide to blog, we even have some pointers to help you share your story through this means.
   
• Become a steadfast EB presence. Use your own situation to make it your mission to raise research funding or general awareness across your state, the country or even the world! Pitch a flag in the social media world and start talking – frequently, truthfully, and all the time. But first, get a few tips on how to effectively use social media to make your voice heard.
   
• Reassure and recruit. Let other EB families know that you’re there for them if they need it and that you hope you can count on them to help you spread the word when you launch major awareness campaigns or special fundraisers during the year. And if you are planning your own awareness campaign, you may want to keep a few things in mind for a successful effort.
   
• Point to the sources. In many instances, the greatest service of all you can provide is directing other EB patients and families to the resources that have helped you personally or that may offer answers, information or assistance geared to their specific circumstances. Share any important web links that you think could be helpful and put others in touch with contacts that could address their specific needs. This handy list of 100 links could be a good starting point.

So ask yourself: what is the best way I can show appreciation for the information and support my family has been able to receive and how can I take that support and information and pass it along to others who could benefit, too? Jot down your own thoughts here and make a plan to get started – today or this weekend!

In a way, we consider holidays like Thanksgiving a special gift, because they promptly remind us that no matter how bad things may get, we have also experienced a richness that other families and those not diagnosed with the disease don’t always get to know: a sense of community and genuine appreciation for the time spent together with loved ones.

Have a safe and happy Thanksgiving!

Sources:
Blogging Your Story: Five Things You Should Know (EB Resource)
Social Media for EB Storytelling (EB Resource)
Planning Your EB Awareness Campaign, (EB Resource)
100 Links for EB Families (EB Resource)

Related Posts:
Doing Our Part: What Can You Share?
Making the Hunt for Good Info Easier
The Importance of Connecting