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.

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