Connecting with Your Child’s School about EB

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your healthcare professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.
 
Heading back to school can be difficult for parents and children everywhere. When there's also the challenge of an EB diagnosis, it requires some additional planning and preparation. Much of that has to do with educating professionals who may be around your child with EB for great lengths of time. We have assembled a few tips here to help you do that.
 

  • Send a standard wound care supply box and instructions with your child. In the event that an onsite school nurse needs to apply a new bandage to your child, or the child will be going offsite for a field trip, you may wish to provide the teacher with a clearly marked supply box indicating order of bandage application as well as related items like scissors, gloves and ointments.
  • Pack a bag of extra clothing to leave stored in the classroom. This might include slippers, additional socks and a change of clothes should your child experience any painful or draining wounds, or other skin trauma from outdoor play or other activities.
  • Provide important contact information beyond parents' numbers. Consider giving your teacher and school nurse EB-specific contact information including the website for DebRA of America (www.debra.org) and the email address for DebRA nurse educator, Geri Kelly-Mancuso RN (nursegeri@debra.org). For more information about her role, as well as phone numbers and hours of availability, click here.
  • Share DebRA's classroom video that defines epidermolysis bullosa for those unfamiliar with it. DebRA offers a practical look at EB via video segments designed specifically for teachers to share with their students as well as their colleagues. This is a free resource produced by The Children's Hospital of Colorado. The two-part DVD "What is EB and Your Welcoming Classroom" introduces what it means for a classmate diagnosed with EB, dismisses myths or confusion about the skin disorder, and reviews ways staff and classmates can support the student. For more information about obtaining a copy of this DVD, click here.
  • Before your child is set to arrive, schedule a meeting with the teacher and, if possible, the school nurse. Sometimes the most successful strategy to educate others is to simply offer the opportunity to sit down and discuss what is at hand. You can answer educators' questions and pose your own to get a sense of the protocol they must follow at their school. During such a conversation, you may also discover some gray areas yet to be worked out and discussed further.

Fall Fundraisers & EB Awareness

It’s hard to believe that EB Awareness Week is only two months away. Have you begun making plans to initiate any fundraisers or EB awareness events in your community for later this year? We’ve rounded up the list so far of events taking place both during this special national awareness week, and also during the remainder of the year.

If you know of any additional events being held this fall or early winter, please let us know. You can email me at leslie.rader@hollisterwoundcare.com or let us know in the comments on our blog or Facebook and Twitter pages. We appreciate you helping us spread the word about the great ways people are educating others about EB.

Currently, these are some events to be aware of taking place later this year.

  • First Annual Butterfly 5K (Lore City, OH)
    Those in the Buckeye State can come out for the debut of this special 5K event in honor of Hannah Blake, which starts at 10 a.m. Saturday, Sept. 20 in Salt Fork State Park, located at 14755 Cadiz Rd. This promises to be a fun family event with music, food, raffles and a 5K open to runners, walkers, as well as those with strollers and wheelchairs, too. For more information, click on this event link.
     
  • 16th Annual DebRA of America Benefit (New York, NY)
    This event to celebrate the official kickoff of National EB Awareness Week is scheduled for 7:30 p.m. to 10:30 p.m. Wednesday, Oct. 22 at the B.B. King Blues Club, located at 257 W. 42nd St. The evening will feature casino games with proceeds to benefit the organization’s various programs. For more information, click on this event link.
     
  • TCS New York City Marathon, Team DebRA (New York, NY)
    Show your support by raising funds or participating in the world’s largest marathon as part of Team DebRA. It will take place on Sunday, Nov. 2. All proceeds benefit DebRA of America. Kudos to this year’s list of participants so far – click here for a peek at that list. For more information, click on this event link.

Gearing up for Patient Care Conference

It’s hard to believe that DebRA’s 2014 Patient Care Conference is only two weeks away! The PCC is such a significant event for those in the EB community, and it offers families and those diagnosed with EB a chance to meet and learn from one another as well as interact with and hear from EB advocates and respected members of the medical field discuss the latest treatment and research news. Although registration is closed for the event, there is still time to get prepared for this upcoming event which only takes place every other year.

This year’s event is scheduled for Wednesday, July 30 through Saturday, August 2 at the Gaylord Opryland Resort & Convention Center in Nashville. The 2014 agenda features a variety of speakers who will talk about such topics as bone health, oral care, genetic testing, blood and marrow transplantation and much more. For a glimpse at this year’s preliminary agenda, click here.

There will also be an area for guests to meet exhibitors, such as bandage manufacturers like Hollister Wound Care and others. I encourage you to stop by the exhibitor area. It can also be a very valuable use of your time. It’s a great opportunity to pick up samples of products you may have heard of but not yet tried, or to ask questions and become more educated about products you’re already using or considering.

As in past years, DebRA organizers have thought ahead and set up some wonderful activities for the children to take part in while parents are attending presentations with well-stockedl playrooms onsite. Kids will have the chance to play together and enjoy games, movies, toys, books, arts and crafts right there near the main conference area. There will be volunteers overseeing the playroom at all times though kids under five years old will need to be accompanied by an adult. At every PCC there is a unique family event planned, and this year it’s a field trip on the General Jackson Showboat to take place Thursday, July 31 from 1 p.m. to 6 p.m.

Anyone who has ever visited a Gaylord hotel knows that these are unbelievably beautiful and large hotels with such a lush and comfortable environment and beautiful indoor botanical gardens, cascading waterfalls, and plenty of places to stop by and see onsite, so it promises to be a fun event for all.

I’m excited about this year’s event and getting a chance to meet everyone, to see some familiar faces, and become acquainted with some new members of the EB community. And I’ll be sharing some thoughts about this year’s event later on this summer but if you’re unable to attend, you can keep up with it daily on a variety of social media including DebRA’s Twitter and Facebook pages. And if you are going, they’ve asked any of us who might be doing some tweeting or Facebook posts of our own to use the hashtags #debraPCC and #EBawareness.

For more information about this year’s event, you can visit the main PCC page at www.debra.org/pcc2014. If you see me there, be sure to stop by and say hi. I look forward to seeing everybody soon!

Wound Care Supplies

As new wound care supplies are developed, we’ve tried to use this blog as a means of educating families about different alternatives available. At Hollister Wound Care, we have a comprehensive line of wound care dressings that address different needs according to the severity of EB and other skin issues that may have resulted because of a diagnosis with epidermolysis bullosa. The list below is designed to offer a brief overview of the various kinds of dressings available through our wound care offerings at Hollister. More information is available at our website at www.hollisterwoundcare.com but if you have any other questions, you know you can always reach out to me directly at leslie.rader@hollisterwoundcare.com.

 

  • Restore Foam Dressings and LITE Foam Dressings
    Featuring TRIACT ADVANCED Technology, these super-absorbent dressings may be helpful for patients facing chronic wounds with light to heavy exudates (LITE foam dressings) and moderate to heavy exudates (standard foam dressings), as well as wounds with fragile surrounding skin. As exudate passes through a contact layer into the foam pad, the wound drains vertically and surrounding skin is protected from excessive softening. For more information about this wound care option, click here to learn about standard Foam Dressings and click here to learn about LITE Foam Dressings.

 

  • Restore Contact Layer FLEX Dressings
    With a flexible mesh and gentle tack to make it easier to apply to hard-to-wrap areas, these dressings incorporate TRIACT® Technology and are highly conformable. They are also non-adherent, ultra flexible and maintain a moist wound interface. For more information about this wound care option, click here.

 

  • Endoform Dermal Template
    Designed to deliver the strength of a dermal template with the simplicity of a collagen-based dressing, it is derived from an ovine (sheep) source and composed of 90% collagen and 10% intact, native extracellular matrix (ECM). The endoform dermal template demonstrates broad spectrum matrix metalloproteinases (MMP) reduction which may contribute to better wound healing. For more information about this wound care option, click here.

 

  • Restore Contact Layer Dressings and Contact Layer Dressings with Silver
    These dressings can be best used with low to moderate exuding wounds. Incorporating TRIACT technology and a non-adhesive, non-greasy surface, the dressings can be removed easily and virtually pain-free, which makes them suitable for wounds with fragile surrounding skin. An alternative featuring silver may be useful for reducing infection for wounds with low to moderate exudates as silver releases while the dressing absorbs the exudates. While early research indicates that continuous silver release may sustain antibacterial activity for up to seven days, patients should check with their doctor before using any product which contains silver sulfate. For more information about this wound care option, click here.

 

  • Restore Calcium Alginate Dressings and Restore Calcium Alginate Silver Dressings
    Offering a high absorbency and less residue than other calcium alginate dressings, these dressings may leave a cleaner surface area when removed than similar dressings available. Because of their advanced fiber makeup, they require less frequent changing, though patients should consult with their physician for guidelines. An optional version is available containing ionic silver complex which releases silver ions in the presence of wound fluid to fight odor and bacteria. For more information about this wound care option, click here.

The Latest in EB Research

For those facing epidermolysis bullosa, staying informed about the latest clinical research related to the disease can be helpful. A couple times a year, we like to offer a snaphot of clinical trials currently recruiting or in progress that could impact the EB community based on those logged on the U.S. National Institutes of Health (NIH) website.

At present, there are 14 open, international, EB clinical research trials listed as active, with one of the studies not yet recruiting and four of the other international studies listed with unknown recruiting status. Of the remaining nine EB research studies which are open and recruiting, six of them are actively being run within the United States and three are being led in other internationally-based locations.

This summary spotlights key background information as it relates to the six U.S. studies. For the most up-to-date, detailed information about all EB studies open and recruiting here in the U.S. and abroad, please go to the NIH’s Clinical Trials page at this link: 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.

  • Gene Transfer for Recessive Dystrophic Epidermolysis Bullosa. Led by Dr. Alfred T. Lane of Stanford University’s School of Medicine, this study launched in December 2010 and was last verified in March 2014. The study represents 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.
  • Stem Cell Transplant for Epidermolysis Bullosa. Last verified in December 2013, 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. During the trial, EB patients receive a combination of a chemotherapy treatment 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. Dr. Lane at Stanford University is also conducting a screening of subjects with DEB to evaluate the characteristics of these patients, who may develop severely painful blistering and open wounds. Last verified in March 2014, 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.
  • Open Label Extension Study to Evaluate the Safety of SD-101 Cream in Those with EB. Launching in March 2014 and last verified in April 2014, this study led by Scioderm, Inc. is the most recently launched, active EB trial. The purpose of this study is to assess the continued safety of topical use of SD-101 cream in subjects with epidermolysis bullosa. Patients age 6 months or older diagnosed with EB are still being recruited through the following locations:  Stanford University (Palo Alto, CA); Ann & Robert H. Lurie Children’s Hospital of Chicago (Chicago, IL); Washington University School of Medicine (St. Louis, MO); Hackensack University Medical Center (Hackensack, NJ); University of North Carolina School of Medicine (Chapel Hill, NC); Texas Dermatology and Laser Specialists (San Antonio, TX); and Seattle Children’s Hospital (Seattle, WA). For more information about this study, click here to link to ClinicalTrials.gov.
  • Characteristics of Adult Patients with Recessive Dystrophic Epidermolysis Bullosa. In May 2009, Stanford University launched another screening that was last verified in March 2014 and is still currently recruiting participants. This trial featuring RDEB patients screens diagnosed adults to study if there are additional characteristics that support survival into adulthood. 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 continues to recruit for participants, and it was most recently verified in July 2013. The study attempts to measure the effectiveness of the Granulocyte Colony Stimulating Factor treatment in DEB patients over a 7-day trial period. Following this timeframe, the team follows up with participating patients at two intervals: 7 days after and 30 days after discontinuation of the drug. For more information about this study, click here to link to ClinicalTrials.gov.

Ways to Support EB Families

Whether you are living with EB every day or know someone who is, there are things we can do to support not only those in our lives impacted by the disease but others and their families, as well.

  • Share, share, share. If you’re on various social media platforms, whether it’s Twitter, Facebook, LinkedIn, Google+ – any of them! – you have an invaluable opportunity to tell people about something they probably aren’t familiar with. Use your reach to educate and seek potential supporters for EB- fundraisers or campaigns.
     
  • Reach out to your friends facing EB or to organizations. If you want to help do something, the quickest way to get there is to ask. Go directly to the source and find out where there is the most need, and how you might lend a hand.
     
  • Lend your talents. Perhaps you have a particular skill or resource that could make a difference to a specific family, group of families or even an EB-focused organization. Put out your message to those parties for whom you might be of service and if you’re truly committed to making a difference, consider offering them pro bono or discounted.
     
  • Rally for fundraisers. Even if a fundraiser is across the country or heck, across the world, there is nothing stopping you from leading a grassroots effort of your own to support that fundraiser. Create your own arm of support in your community and raise funds and awareness for an EB charity you follow. Or still yet, reach out to those fundraiser organizers directly and ask them if there are other needs that they have for their event such as food, drinks or professional services of some kind and offer to provide resources to help them with that specific need.

There are so many ways all of us can support the EB community, even when we are not directly affected. If we maximize our resources to do it, whether we are using our channels of influence to their fullest or directly promoting efforts to grow research dollars or family support, we can do so much collectively. So we encourage you to find you own unique niche for making a difference.

Lucky to Have These EB Voices

When we first started this blog back in late 2009, we had a small community. So many people still had not heard of epidermolysis bullosa at that time. It’s been a mission for many of us to change that, and in four-plus years, it has. There are definitely more families, more communities and more researchers involved in spreading the word about EB. Here are just three of some EB voices who have been very influential in educating others about EB.

  • Andrew and Shawn Ripps Tavani. The Tavani family has been a consistent supporter of EB families through its various fundraisers for DebRA. Since daughter Ellie was born with EB in 2006, the Tavanis have been reaching out to their community and beyond to raise funds for an organization that helped them through its various support programs and continues to do so. The Tavanis coordinate fundraisers through Butterfly Wishes for Ellie including an EB Awareness Walk and their main annual silent auction fundraiser to be held this year on Thursday, May 22 in Atlanta. Click here for more details.
  • Geri Kelly, RN. Just as the Tavanis are educating communities about EB through their events, DebRA’s on-staff Nurse Educator Geri Kelly, RN, is educating anyone who may come into contact with an EB patient, to ensure they have the necessary information about the disease and to serve as a valuable resource for questions about care and needed supplies, particularly with those unfamiliar with the disease or what care may be required. As Nurse Educator, Kelly plays a vital role as a point of contact for parents of newly diagnosed children with EB, patients still trying to fully understand their condition, and healthcare professionals and caregivers managing care for EB patients. Click here to read more about her role at DebRA.
  • Alfred T. Lane MD. As a professor and Chair of Dermatology at Lucile Packard Children’s Hospital at Stanford University, Dr. Alfred Lane has been one of a small group of research leaders in the study of epidermolysis bullosa. He has become a key voice in the discussion of EB, continuing to educate others in healthcare, the scientific community and the general public about the disease and its impact. Specializing in pediatric dermatology, he continues to lead clinical trials through the University and has participated in videotaped interviews on the subject of EB that have since been made available on sites like YouTube for online learning and distribution of information. Click here to view one such interview.

EB & Rare Disease Day 2014

This month marks Rare Disease Day, an annual day which observes the prevalence of rare diseases and their impact on the people living with them. It was started six years ago by EURORDIS and the Council of National Alliances, and its recognition has grown beyond being a European and become a world occasion with more than 1,000 events held since its launch.

 

The focus behind this one day is in line with what EB patients, families and their advocates set out to do every day – educate people; inspire others to become involved in advocacy, fundraising and research; and instill a better understanding of the kinds of challenges and needs facing the rare disease community.

 

Rare Disease Day has also been embraced by those in highly influential roles to garner more attention for the topic, including politicians and entertainers. Last year, over 70 countries from around the globe took part in what became the largest Rare Disease Day ever. On its own website, the coordinators of the event state their ultimate goal is for the World Health Organization to recognize the last day of February each year as one of its official days to help build international awareness of rare diseases.

 

Here in the EB community, it can be a perfect opportunity for families impacted by EB to speak up. Families could take the occasion to contact their elected representatives about any upcoming or current bills that could impact insurance coverage or funding that might benefit those afflicted with rare diseases.

 

So what other things could you do on a smaller scale to promote Rare Disease Day in your own community? Share information about the international event with your child’s school to explore opportunities to promote it there. Contact local newspapers and television channels. Reach out to any civic or social groups in the area to encourage them to host their own awareness event. Let your company’s HR department know about the annual event and inquire about any opportunities to promote there. Take to your social media channels like Twitter, Facebook, Google+ and LinkedIn and spread the word!

 

To read up about Rare Disease Day 2014, be sure to visit the official website at www.rarediseaseday.org.

Upcoming EB Events

We’re not even two weeks into the new year and already we’re raring to go to promote any future EB awareness events or fundraisers that we’ve learned about. The following events are currently listed on the DebRA website, where additional information can be found on either the local events page or DebRA-hosted events page. Proceeds from each of these events will go toward DebRA’s various programs and services to support EB families as well as research for treatments and a cure.

If you know of any other events taking place during the first half of 2014 to benefit any EB-focused organization, EB support program or individual or family directly impacted by EB, please let us know. You can email leslie.rader@hollisterwoundcare.com or leave a comment on the blog or at Facebook or Twitter. And we’ll be sure to help spread the word, too!

  • “TEAM DEBRA” at the Florida Disney Half Marathon (Orlando, FL)
    This year, there will be the debut of a TEAM DebRA taking part in the event held Saturday, January 11 at Walt Disney World Epcot Center.
  • Cure 4 Cole 2 (Jacksonville Beach, FL)
    This two-day musical event takes place Saturday, January 25 and Sunday, January 26 at the Landshark Café, 1728 3rd St. N. This second annual event features performances from a dozen bands, including Celinda Pink and The Music Factory and The Drifters, and also includes an auction of donated musical instruments.
     
  • 3rd Annual Rafi’s Run Celebrating Rafi Kopelan (New York, NY)
    This popular DebRA of America fundraiser is scheduled for Sunday, March. 9 at 10 a.m. in Riverside Park, 103rd St. Additional details about registration and other happenings at the benefit will be posted soon.
     
  • “TEAM DEBRA” at the NYC Half Marathon (New York, NY)
    Supporters can inquire about participating, sponsoring or coming out to volunteer or cheer on those taking part in this unique 13.1 mile trek through the Big Apple on Sunday, March 16.
     
  • “TEAM DEBRA” at the 16th Annual Flying Pig Marathon (Cincinnati, OH)
    This race, scheduled for Saturday, May 3 and Sunday, May 4, is a qualifying race for the Boston Marathon and offers over 10 events including the marathon, half-marathon, 10K, 5K, 4-person relay, kids’ events and more.

Reflections on 2013

 

Whenever a year ends, we might feel compelled to look back on it and reflect on what happened – the victories, lessons learned and other memorable occasions. For us, 2013 was a pivotal year for the EB community and also for EB Resource, too.

 

We saw researchers continue pursuing research findings for a variety of EB-focused clinical trials already in progress. Organizations like DebRA of America, EBMRF and Jackson Gabriel Silver Foundation continued to spear efforts to raise awareness, funding for EB clinical research and support for the EB community. Planning for the Patient Care Conference got underway as details of next year’s event, July 30-August 2 in Nashville, Tenn., were announced.

 

In 2013, I moved from a member role on the Board of Trustees at DebRA of America to that Board’s President. The greater role and involvement has been a lot of work but exciting to be part of such a forward-thinking organization and I’m honored to be working alongside the other Board members and DebRA’s executive director Brett Kopelan.

 

Unfortunately, every year of triumphs and celebrations brings some sadness, too, and each time we would hear of another member of the EB community passing, we felt a sense of personal loss, which also brought many of us closer together to continue to fight for greater awareness for the disease.

 

What will 2014 bring? It’s hard to say for certain but I know as we all go forward, we’ll find new avenues for reaching out to others to educate them about this little-known disease and we’ll find other ways that we can be supportive of each other using the knowledge and resources we have and new ones that we collaborate on or create altogether.

 

We wish all of you a bright and beautiful new year, from our family to yours.