Bringing EB Awareness to Your Community

Recently, I got involved with bringing a production of the EB-focused play "What Were We Talking About?" to my community, so I thought I would share some of my experience with others in the hopes that perhaps some of you reading this might consider hosting the play in your own hometown. And if this particular event is not something you would want to coordinate locally, maybe this blog might inspire you to launch something else in your community that feels right to you for raising local EB awareness. Every effort we make in our communities to educate others about EB and who it impacts is a step forward in greater attention being devoted to medical research, a potential increase in fundraising support of EB families and greater tolerance by others who live with EB and whose visible wounds are sometimes misunderstood and often feared by others.

I first learned about the play "What Were We Talking About?" when Gale Alexander, one of the play's authors, called me to sponsor its very first production which premiered in Wyoming. She and Linda Stoval, Gretchen Wheeler and Vickie Cawthra make up the group the Wyoming Magnolias who first brought the production to the stage. After the play was launched in both Wyoming and in New Jersey, both states of personal significance to two of the grandmothers behind the story, they wanted the play to continue its path across other cities. Gale spoke with Karen at DebRA of America about possible destinations for the play to travel next. That's when I received a phone call asking if I might be interested in bringing the play to my hometown of Louisville, KY. Gale said she would find a producer but if I could step in to head up the fundraising effort, locating sponsors and promoting ticket sales, that my collaborating with them would be a great way to help. Having worked many years on my own Butterfly Benefit event in the past, I knew I could absolutely lend a hand in that way. Plus, it had been a few years since I had coordinated a fundraiser, so I was eager to do my part to raise EB awareness and hopefully some support dollars, too, so I agreed to be part of the Louisville team to bring this special production to my community.

Emerging Artist Group founder Elizabeth Huling directed and produced the show when it was brought to Louisville. Plans were in the works for a year but didn't really move into full-throttle until January of this year. My main goal was to raise awareness for EB and we certainly had our share of scheduling challenges given there were some other events taking place on the same evening, including a major NCAA basketball game down the street at YUM Center. But we were pleased with the feedback from those who attended.

We had delicious food for guests courtesy of the caterer, Upper Crust. The tables were adorned with beautiful flowers in mason jars and jelly jars with candles. We tried to carry the focus of the play throughout every detail of the evening, from butterfly-shaped dishes on the tables to relabeled wine bottles featuring the playbill photo cover and What Were We Talking About? 2015 for the red wine and the map of Nachtoches, LA for the Magnolia Blanc. Each performer involved did a wonderful job and worked so hard to get to the heart and soul of her character.

If I had any advice to pass along to others who might consider bringing this important play to their communities, it would be…

  • Start early! It can take time to recruit sponsors for the event and to advertise within the playbill. It also takes some time to get the word out about an event in order to sell the number of tickets necessary to make an event a success.
     
  • Don't forget to check what other events are going on in the area simultaneously because if it is a popular annual feature or something huge (like March Madness, for instance!), it can create an unnecessary obstacle that can be avoided simply by picking an alternate date and time.
     
  • Be sure to confirm the venue early to host the production. It is always a wise idea to ensure the location is set before you get your heart set on a particular date.
     
  • Consider all of those details that make the whole theater experience memorable for guests- like whether or not you'll include food and beverage, what kind of table decorations you will need, whether to hold other supporting events simultaneously such as a silent or live auction, raffle or door prizes.
     
  • When in doubt, it can sometimes be worthwhile to bring on an event coordinator to help you. They can be helpful in not only coordinating everything but offering advice on areas where you can allocate less resources and where to focus time and money in the planning.

Whatever kind of event you take on, whether it's putting on a production like this one or some other type of fundraiser or awareness event, it is so important to do something. Be proactive and bring EB Awareness to your community, because the more people learn about it, the more they want to help. And the farther our reach, the greater impact we can have and on more lives, too. I urge you to take the time to contemplate – what can you do? Because the cost of doing nothing is far too great.

Growing Support for EB Awareness

Whenever we have the opportunity, we like to share information about upcoming EB awareness events and fundraisers so that our fellow members of the EB community show their support or help spread the word through their own social media channels. Here is a diverse list of events we have learned will be taking place over the next few months, and it involves everything from running to biking to gambling.

  • 2015 New York City Half Marathon (New York, NY)
    Supporters can come out to cheer or donate to TEAM DEBRA taking part in this race event on Sunday, March 15. Runners will take a 13.1 mile tour of The Big Apple, and 100% of TEAM DEBRA's donations raised will go toward DebRA of America's programs and services. For more information about this event, click here.
     
  • Cycle for a Cure (New York, NY)
    If bicycling is more your interest, a fundraiser is scheduled later this month that will allow participants to take a fun bike ride together, again around New York City. The event starts at 2:30 p.m. Saturday, March 21, at SoulCycle's West 27th St. Studio. Participation is open to cyclists age 18 and over with tickets $50 general admission and $75 VIP. For more information about this event, click here.
     
  • Dig Up a Cure for EB (Lexington, NC)
    Families can take part in a volleyball tournament with six or more players required per team, with two separate brackets based on skill level, at this event scheduled Saturday, March 21, at North Davidson High School located at 7227 Old U.S. Hwy. 52. For more information about this event, click here and scroll down to one of the North Carolina event entries.
     
  • What Were We Talking About? An original play (Louisville, KY)
    Those in or near the Louisville, KY-area can come out for a performance of an original play written by the Wyoming Magnolias and being performed at 6 p.m. Saturday, March 21, at Gardenscourt Louisville Seminary, with proceeds to benefit the EB community. For more information about this event, click here.
     
  • Cyndi's Wish for a Cure (Miss Point, MS)
    Supporters can shop at this garage sale with proceeds benefiting DebRA of America. Event takes place 6 a.m. to noon Saturday, April 11, at 17729 Hwy. 613. For more information about this event, click here.
     
  • All In for a Cure (New York, NY)
    Poker fans can have some fun and benefit the EB Research Partnership at this debut Texas Hold 'em EB fundraiser 6 p.m. to 10:30 p.m. Thursday, April 23, at the Penn Club. For more information about this event, click here.
     
  • Flying Pig Races (Cincinnati, OH)
    This series of 10 race events takes place over Saturday and Sunday, May 2-3, featuring a marathon, half-marathon, 10K, 5K, 4-person relay, Beer Series, High School Challenge and Kids's events. For a third consecutive year, DebRA of America has been selected as the official charity partner for this 17th annual benefit and will have a tent set up at the event. For more information about this event, click here.
     
  • 9th Annual Butterfly Wishes for Ellie (Atlanta, GA)
    This benefit event and silent auction in honor of Ellie Tavani will be held on Thursday, May 7, at The Park Tavern in Midtown Atlanta. Last year's event raised nearly $50,000 for DebRA. For more information about this event, click here and scroll down to the Georgia section.
     
  • 4th Annual Jogging for Jonah (Clemmons, NC)
    This race event in honor of Jonah Williams is scheduled to start at 8 a.m. Saturday, May 9 at Tanglewood Park. The day will include a 5K race and fun run, as well as a raffle, face painting, inflatables, food and beverages, music and more. Proceeds benefit DebRA of America. For more information about this event, click here and scroll down to one of the North Carolina event entries.

If you know of some future EB awareness events or fundraisers scheduled, please reach out to us at leslie.rader@hollisterwoundcare.com so we can help promote these upcoming benefits in future social media posts or blogs. And many thanks in advance to all of those who have invested their time, energy and resources in coordinating and supporting these events to directly benefit the EB community. We are sending best wishes to all of you for very successful events!

Facing a Rare Disease

February 28 marks Rare Disease Day. For many families facing a rare disease, such as epidermolysis bullosa, it can be as taxing physically and emotionally on caregivers as it is on those diagnosed. Rare Disease Day is an international day of awareness established to educate those in the medical field, those in media, and those who create and enforce public policy that can directly impact these families.

As with previous years, Rare Disease Day 2015 will be comprised of campaigns across the globe intent on reaching hundreds of thousands of people and generating media buzz to be capitalized on by bloggers, tweeters, and interactive Facebook communities like ours in this era of social media and grassroots campaigning.

Although Rare Disease Day started in Europe in 2008 by EURORDIS and the Council of National Alliances, it has grown into a collaborative international effort worldwide connecting health professionals, legislators, researchers, and those in industries serving rare disease communities such as the EB community. Last year, a new record-high 84 countries participated in the awareness day.

For many families facing a rare disease, much of the battle is locating support resources, and accurate, timely health information. Some helpful sites focused primarily on providing relevant information about thousands of rare disease, such as EB, include:

For more information about Rare Disease Day or to see what related events may be taking place near where you live, visit www.rarediseaseday.org/. If you have been planning your own event to reach area media on the designated date, make certain to post it at the Rare Disease Day site so others can come out to support your campaign.

What’s Next for the EB Community?

As we begin a new year, it is exciting to anticipate what lies ahead. Each 365 days we get a few steps closer… closer to educating more people about the skin disorder; closer to reaching more recently diagnosed patients and their families to get tools and information into their hands that they may need; and closer to connecting more clinical researchers to develop better treatments or even a cure in the future. EB awareness has been a core mission for us here at the EB Resource blog since the beginning, and that has not changed. It is just one goal amid many and some very specific missions at other EB-focused organizations, such as DebRA, the EB Research Partnership, EBMRF and other dedicated groups.

Every year, our community grows. New families are touched by the disease, and often their family and close friends join our circle and demonstrate a willingness to learn and share their new knowledge with others. And as that circle expands, we have a greater opportunity to communicate more broadly than we did before and inspire others to ask themselves questions, such as: how can I use my sphere of influence to get the word out about this disease? What talents or skills do I have that could possibly lend themselves to support EB families or campaigns to assist them? And are there specific actions I can take in terms of events, campaigns or community/political involvement that may make a difference for EB resource fundraising, research progress or other tools to support the cause?

Each year, the medical community re-examines current clinical trials underway and frequently launches additional research to test new treatments by working closely with EB patients and their families. What new trials might 2015 include? It is too early for us to share here, but, as always, you can expect we will be keeping our eyes and ears focused on the latest news of these clinical trials and sharing with you what we learn.

A new year is a wonderful time to look back and assess, as well as look ahead and target those things we want to do. So we suggest at this ideal time, the start of a fresh new year to ask yourself the question, 'what is next for the EB community?' Because that will also be very much up to you to decide. And we look forward to a new year of educating others about EB with you.

A Year of Enlightening

Every time the year comes to a close, it is a great chance to reflect on all that has taken place. There are so many new people we have been introduced to within the EB community and, of course, many big events we have shared together, the biggest of course being the bi-annual Patient Care Conference (PCC). What a wonderful event that was hosted by DebRA of America and the team at Gaylord Opryland Resort and Convention Center in Nashville this summer.

At this year's PCC, many families got an opportunity to interact with those deeply entrenched in the latest medical research and clinical trials revolving around epidermolysis bullosa treatments and the search for a cure. They also got the chance to meet with others diagnosed with EB and their families. Nothing is more inspiring than finding out we are not alone in our challenges and getting valuable insight as well as practical suggestions about caregiving, food and shopping challenges, and other areas of living with EB. This year's event sought out to educate families, the medical community and others directly impacted by those facing EB, and it certainly succeeded at that.

Once again, we launched our own interactive effort to make more people aware of EB with our annual EB Tweet-a-thon during EB Awareness Week in late October. Hope you were able to take part and share some if not all of our RTs posted hourly for 24 straight hours. If we even educated just a few dozen new people about this rare disease they had never heard of before, then collectively, we helped raise the presence of these families in need of support both from their neighbors and medical communities worldwide.

Education is a powerful tool to make things happen. Each time we take even a few moments to share information with another person or group of people, that shared knowledge holds the power to affect change or compel others to take action. I don't know what resolutions you may be settling in on for the new year, but I do hope one of them is to continue helping to raise EB awareness by whatever means available to you.

Thank you, everybody, for all of your support this year at the blog and in our Facebook and Twitter communities. We look forward to a bright, promising new year with each of you. Best wishes for a safe and happy holiday season.

Thank You, EB Voices!

We wanted to take this month that celebrates thankfulness to send along our own gratitude to the individuals and groups whose work and words have helped to raise awareness, and, in some cases, research or support dollars for those diagnosed with EB and their families. We have frequently featured them here and called them "EB Voices" because they, in their own unique way, have spoken up and made their voice heard. This can be really difficult, particularly in a world of so many loud voices booming back at us while we try to bring focus to a rare disease like epidermolysis bullosa.

We have often featured those voices through interviews or special guest blogs. Since some of our followers could be new to our blog or have only joined us this year, we thought it would be a great opportunity to share some of those past links with you as our way of introducing you to merely a handful of the wonderful people out there who do their part to raise awareness about EB every day – some are patients, others  family members, and still others, authors or advocates, but all of them have something to say. And we are appreciative that they take the time to do something about it.

So we introduce you to some past featured EB Story conversations. Thanks for reading!

EB Awareness Week

*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.

EB Awareness Week is nearly here, an annual, international campaign to educate others about epidermolysis bullosa as well as garner support for EB families. Each one of us has the ability to make a difference and be a part of this collective effort. EB Awareness Week runs from October 25 through October 31. How will you be involved?

Here are some suggestions:

•    Support events far and wide in any manner possible.
Visit sites like DebRA of America, the EB Research Partnership, EBMRF and others for information about local and national events taking place during EB Awareness Week. Spread the word via social media platforms so that others who are located in those areas can take part and find ways to show your own support whether near or far, either through fundraising or promotional means.

•    Coordinate your own virtual or in-person EB Awareness event.
It’s not too late to kick off a fundraising or awareness campaign online or host a small event at work or in your neighborhood. Check with your HR representative about holding an informal fundraiser at the office or find out what is required to set up an information table outside your community center or local library.

•    Spread Your Own EB Message to Raise Awareness.
Do you blog? If so, why not include a special entry during EB Awareness Week? Or better yet, maybe blog something different about EB that people may not be aware of or post on a social media platform a different EB-related link each day. We appreciate you including EB Resource for one of them, if you do!

•    Extend a Hand Wherever It Is Needed Most.
If you personally know an EB family, take this time to reach out to them this week and offer to pitch in with some errands to alleviate stress. Or better yet, ask the parents what you and your family could do to best support them. Sometimes people are afraid to ask for help but when an offer is extended, it may be just what is needed.

•    ‘Pass It On’ During Our Upcoming Tweet-a-Thon.
Every year we take 24 hours to devote entirely to tweeting about EB hourly. We ask those who follow the EB Resource Twitter page to RT as many if not all of our tweets designed to introduce EB to those unfamiliar with the skin disorder and demonstrate ways they can get involved to learn more or be a part of the movement to find a cure and better treatments for EB. We simply ask those who RT to include our designated hashtag #RT4EB. So look for that Tweet-a-Thon to begin 9 a.m. Tuesday, Oct. 28 and run through 8 a.m. Wednesday, Oct. 29.

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!