Helping the EB Community Be Heard

Every year, EB communities across the globe take this upcoming week to reach out to others and educate them about epidermolysis bullosa. EB Awareness Week is recognized and runs October 25 through October 31 in 112 countries around the world. During this time, many organizations focused on the disease coordinate awareness campaigns and fundraising events to not only draw more attention to a rare disease still unknown to many but also to support efforts to develop better therapies and a cure.

In the past at our blog, we have offered many suggestions for how you can make the most of your EB Awareness Week including tips for planning fundraisers and plotting out your own awareness campaign. This week, we want to ask you for some assistance. In addition to coordinating your own activities and support for others’ events, you can help us this Tuesday and Wednesday.

 

Once again, EB Resource will be holding its annual 24-hour EB Awareness Tweetathon. During this time, we will tweet every hour starting at noon on Tuesday, October 25, the first day of EB Awareness Week and continue to post through noon Wednesday, October 26. Our theme this year is EB: Just the Facts, Ma’am, and we will be focused on sharing some things about EB that followers may or may not realize about it.

 

So what can you do? Share, share, share! Retweet our hourly tweets to your own followers including our hashtag #RT4EB16 and send out any of your own tweets about EB with the same hashtag in support of our EB Awareness campaign. Help us spread the word and educate others about a disease so few people understand.

 

Good luck, everyone, in your efforts to raise EB awareness this week. Be sure to share with us all that you’ll be doing, too, at our Twitter and Facebook pages. And don’t forget to stop by our Twitter page and help out, starting Oct. 25 at noon for 24 hours straight!

Reflections on DCC 2016

This year’s Debra Care Conference in Grapevine, Texas (just outside of Dallas) held July 24-27 offered many of the same valuable experiences as past events but it definitely felt like a new and different event. I wanted to share some observations and thoughts about the conference, including some changes or additions. The first noticeable change on the surface is the name, of course, taking on the organization’s identity as part of the conference title. This was a really good opportunity for families in attendance to connect with various individuals associated with the organization and specific resources available through the organization.

 

 

Each conference leaves its own distinct impression and carries a unique flavor from its predecessors in part because it is hosted by a new city and state when it is held every two years. This was the sixth event I have been a part of but I will admit that my own experiences are shaded differently than other attendees as I am on the Board for debra of America, I do work for a wound care company and was an EB parent, so I bring a unique balance of a variety of emotions to this event each time I attend.

 

I especially love seeing what the planners will offer children attending in the way of activities at that year’s venue. This year, the play area was in the same room as exhibitions and included everything from superheroes and cheerleaders to storytellers, musicians and even a monkey! Everywhere I looked, children were having a blast. One amusing aside: there was a sheriff’s convention being held there on the property at the same time as the DCC. The kids really made quite an impression on the officers in attendance, because they made a point of returning to the kids’ room to talk with them. These tough, no-nonsense authority figures suddenly became like big teddy bears as they interacted with the children. It was beautiful to see.

 

If you asked me what my favorite presentation was, I would not be able to single out any one person. I am always in awe of the extremely intelligent and genuinely caring health care professionals who work so hard to help EB families and take part in this event to meet them and answer questions. I enjoyed listening to all of this year’s presentations.

 

I did spend much of my time talking with attendees in the exhibition hall located just outside the presentation room. Another favorite part of the event for me is getting to visit with the families, some whom I have known for the past 12 years and other new families that I get to meet for the first time at the conference.

 

As always, I was very impressed with the Gaylord Hotels staff. This was the third conference in a row hosted by a Gaylord hotel, this time at the Gaylord Texan Resort and Convention Center, and I am constantly amazed at how well they accommodate such a large group of people. The unique way they can bring the outdoors inside and provide a setting that is safe, warm and uplifting to truly welcome our EB families is outstanding.

 

One of the changes made to this year’s schedule was that debra began many of the presentations later in the morning which was helpful to those families who needed the extra time for bandage changes in the morning or who wanted free time to explore the beautiful hotel. In general, there were more opportunities for free time this year which is a wonderful thing when families are getting the unique chance to meet up and visit with each other, and let their kids play together in a fun, safe environment.

 

A final side note: This year’s conference fell on my daughter’s birthday (she would have been 13 this year). It made being at this particular conference a little harder knowing that she could have been one of the kids hanging out in the teen room. But that is not the path I was given. I would not be working for a wound care manufacturer if it wasn’t for the experience she gave me. She has helped me help others and that is what was meant to be.

 

I hope everyone who got a chance to attend this year’s event took away valuable information and many happy memories. I look forward to the 2018 event already.

Preparing Your Butterfly Child for School

*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 any healthcare needs.

 

It’s that time of year again when families transition into different schedules and routines: the start of a new school year. For some in the south, its already begun. For our friends in the north, it looms.

 

For EB families, the school year presents its own set of challenges as parents have to worry not only about children’s usual needs like outfits and school supplies but also about ensuring their child’s physical safety offsite in an environment not likely to be EB-friendly. In the past, we have blogged about things you can do to support your child and work toward a healthy and fun school experience.

 

  • Plan Ahead:  a few years ago in a blog titled “Connecting with Your Child’s School about EB,” we offered different things you could do as a parent to set up your child for comfort and success in his or her new weekday surroundings. These may include everything from packing a bag of extra comfortable clothing to be stored in the classroom to scheduling a private meeting with the school nurse and teacher to discuss your child’s health challenges beforehand.
     
  • Start a Conversation:  in another past blog titled “Bringing Your Child’s School on Board,” we noted various ways you can initiate a discussion about EB in your child’s school and what people you may want to get involved in the talk. The first step in educating others is introducing them to the language and basics about epidermolysis bullosa. With the use of some other key sources of information and educational resources, you can begin to build a support network of educational professionals also looking out for your child when he or she is away from home.
     
  • Lean on Others:  we may say this often, but it is true — we are all here for each other. Our online community of EB patients and their families continues to grow and other families can be a great source of ideas and support for challenging life transitions such as sending our butterfly children to school. In another previous blog titled “Families Helping Families,” we note that social media tools can be invaluable for reaching out to other parents with questions or polling them about challenges that come up during the school year. As long as we are sharing our experiences with one another, we can all become better equipped to handle whatever comes our way, and as EB parents who have already guided our children through the transition to school, we always have that gift of experience to offer others.

EB Research Update, Summer 2016

A variety of clinical trials are currently recruiting participants or already in progress that could ultimately benefit the EB community with its findings. Using the U.S. National Institutes of Health (NIH) website, we are able to offer a useful summary of these research trials that have been logged by the NIH.

 

Currently, there are 20 open, international, EB clinical research trials listed as active, with four of the studies not yet recruiting and four of the other international studies listed with unknown recruiting status. Of the remaining 12 EB research studies which are open and recruiting, seven of them are being run within the United States and five are active in other internationally-based locations.

 

The following summary spotlights key background information related to the seven open and recruiting U.S. studies. For the complete, up-to-date details about each of the EB studies open and recruiting here in the U.S. as well as internationally, please visit the NIH’s Clinical Trials page here: http://clinicaltrials.gov/ct2/results?term=epidermolysis+bullosa&recr=Open.

 

The following is not an endorsement but a brief summary of EB clinical trial background information available at this time and is strictly for informational purposes only. For more information, visit the links provided. 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.

 

 

  • Study of Efficacy and Safety of SD-101 Cream in Patients with Epidermolysis Bullosa. Sponsored by Scioderm, Inc., the target of this study is to evaluate the efficacy and safety of SD-101-6.0 cream versus a placebo in the treatment of EB. Launched in November 2009 and last verified in June 2016, this study is currently recruiting participants in various locations across the U.S. including the University of Missouri (St. Louis, MO), Stanford University Dept. of Dermatology (Redwood City, CA), University of Colorado School of Medicine (Aurora, CO), Ann & Robert H. Lurie Children's Hospital of Chicago (Chicago, IL), Washington University School of Medicine (St. Louis, MO), University of North Carolina School of Medicine (Chapel Hill, NC), Cincinnati Children's Hospital Medical Center (Cincinnati, OH), Seattle Children's (Seattle, WA), 'Specially for Children (Austin, TX) and Texas Dermatology and Laser Specialists (San Antonio, TX), as well as in France, Italy, Germany, the Netherlands, Austria, Poland and the U.K. For more information about this study, click here to link to ClinicalTrials.gov.
     
  • Characteristics of Patients with Dystrophic Epidermolysis Bullosa. Jean Yuh Tang at Stanford University is also conducting a strictly observational study by screening subjects with DEB to evaluate the characteristics of these patients, who may develop severely painful blistering and open wounds. First launched in November 2009 and last verified in March 2016, this trial involves the study of cells to support the development of future therapy strategies. For more information about this study, click here to link to ClinicalTrials.gov.
     
  • Stem Cell Transplant for Epidermolysis Bullosa. Launched in January 2010 and last verified in May 2016, this study by the Masonic Cancer Center at the University of Minnesota attempts to test a primary hypothesis that the infusion of bone marrow or umbilical cord blood from a healthy donor will correct a collagen, laminin, integrin or plakin deficiency and reduce the skin’s fragility caused by severe forms of EB. A secondary hypothesis also examines the impact of mesenchymal stem cells from a healthy donor on the safety and efficacy of an allogeneic hematopoietic stem cell transplant. For more information about this study, click here to link to ClinicalTrials.gov.
     
  • Gene Transfer for Recessive Dystrophic Epidermolysis Bullosa. This study launched in December 2010, led by principal investigator and associate professor at Stanford University Jean Yuh Tang, and was last verified in March 2016. The interventional study is a collaboration between the university and the National Institute of Arthritis and Musculoskeletal and Skin Diseases. During the study, researchers create a graft of the participant’s skin that has been genetically engineered in a culture to attempt correcting the cellular protein deficiency that led to the 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.
     
  • Effect of Broccoli Sprout Extract on Keratinocyte Differentiation in Normal Skin. Launched in September 2015 and last verified in October 2015, this study led by Johns Hopkins University (Baltimore, MD) features adult participants who will apply a broccoli sprout extract-jojoba oil compound to one arm every night under occlusion for a week with Jojoba oil alone applied to the other arm. At the end of that week, a 6mm punch biopsy will be taken from both arms and analyzed via polymerase chain reaction (PCR) and immunohistochemistry for differences in skin proteins.  For more information about this study, click here to link to ClinicalTrials.gov.
     
  • MT2015-20: Biochemical Correction of Severe EB by Allo HSCT and Serial Donor MSCs. As one of the newest studies launched in March 2016 and last verified in May 2016, this study by the Masonic Cancer Center at the University of Minnesota is a phase II study established to determine the event-free survival at 1-year following an allogeneic transplant and serial mesenchymal stem cell (MSC) infusions from a related donor or matched unrelated donor for the biochemical correction of severe EB. For more information about this study, click here to link to ClinicalTrials.gov.
     
  • A Study of FCX-007 for Recessive Dystrophic Epidermolysis Bullosa (RDEB). This study, launched and verified in June 2016, is led by Fibrocell Technologies and administered at Stanford University (Stanford, CA). The purpose of the study is to evaluate the safety of FCX-007, C7 expression and the presence of anchoring fibrils resulting from FCX-007 and to analyze wound healing as a result of FCX-007 administration in subjects with RDEB. For more information about this study, click here to link to ClinicalTrials.gov.

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.

 

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.