Sharing Our EB Story: Laurie Sterner & The Butterfly Fund, Part II

Last week, we began a conversation with Laurie Sterner, founder and CEO of The Butterfly Fund. She shared with us the inspiration and story behind the launch of her group. This week in part II, she shares why she stays committed to helping EB families and what’s in store for the organization and its supporters.

EB Resource (EBR): What campaigns and promotions has The Butterfly Fund been able to carry out so far?

Laurie Sterner (Laurie): We don’t necessarily have a campaign or promotion, yet we do our best to raise awareness for EB every chance we get. Whether it be having a booth at local fairs or festivals, or our own annual event – The Butterfly Ball. We use social media to reach a much larger group of people – Facebook, and even our own business, ljs Photography, has a link at our website, simply because the two are very intertwined. They both fill a place in our hearts. However, this last December we started a project called the Secret Stocking Project. We made little stockings that included 3 “wishes” for Christmas gifts from families who had sick children. These included gifts for the sick child as well as their siblings. We did diligent research in finding these families, knowing that the ones we chose were the most deserving. The project was received with an overwhelming response to help and participate, and I can proudly say that due to the community's outpouring, over 400 gifts were sent to all of these children for Christmas. We were so touched by the response that the 2nd Annual Secret Stocking Project will be underway again come November 2012!

EBR: So what’s next for The Butterfly Fund?

Laurie: The Butterfly Fund will be going through some wonderful changes in the very near future. Our plan is to get more people involved, even if not for The Butterfly Fund, but for something they are passionate about. Our mission it to get people involved, inspired and truly making a difference in this world. Our own business will be donating a percentage of all print sales to any organization of the customer’s choosing. We want people to follow our lead – we want people to experience the joy in giving, the joy in making someone else’s life a little bit happier. Some people just need other people to care, and it’s as simple as that.

EBR: If somebody wants to get involved with the Butterfly Fund, what are the ways they can do so?

Laurie: We are always looking for new board members as well as committee members. We always need volunteers for our event, and to date, we have been so fortunate to have so many selfless people who believe in our mission and us.

EBR: What do you personally take away from being a part of The Butterfly Fund?

Laurie: I always tell people that The Butterfly Fund never fills my pocketbook, but it certainly fills my heart. My husband and I have always been involved in something – some kind of event or organization that was there to help someone else. We realize that too may people wait for something to affect them personally before they will get involved and give back. I guess we were never those kind of people. We were very involved in another wonderful organization for children with cancer and it really filled our hearts. When we saw too much money go to salaries and unnecessary things and saw that people weren’t involved for the “right” reasons, we just felt we could do more. We’ve always felt that if you can so something for someone in need, you need to do it. We get this indescribable feeling when we do something that makes someone smile or makes someone cry. Sometimes just knowing, if even for a split second, we made another person's existence a little bit better – a little bit brighter – there is absolutely nothing in this world that can compare to that feeling.

EBR: In what areas of their lives do you think the EB community could use greater support, financially or socially? Where is the greatest need?

Laurie: Awareness is everything. How can you make a difference when you don’t even know something exists? Even after five years of telling everyone I know about this horrible disease, I am still shocked about how many people still have never heard of it. THIS alone has to change. I am thankful for celebrities like Courteney Cox, David Arquette, Brad Pitt and others, but THIS is where people will flock – people will follow when it’s popular and a celebrity brings this to the forefront. I think HUGE strides have been made with social media, which has allowed families to find each other. Families who may have never met before are becoming amazing friends and confidants. It seems there is still a need for supplies; even though there are WONDERFUL organizations helping, it still just doesn’t seem to get to everyone. Some insurance companies work with the families, while many others don’t … leaving the parents scrambling as to how they will afford bandages for the month. There are greater needs when the children become older, like the need for wheelchairs and handicap vans and housing. I know these needs are becoming more frequent now, and as far as I know, there is no funding for any of it. Of course, my dream is that one day, EB will be something everyone has heard of, but it will no longer exist. I’m not relying so much upon a cure, but I long to see a preventative. When a child with EB is out in public, I want for people to embrace that child and KNOW exactly what he/she has and know exactly what he/she goes through. Sadly, I have my doubts I will see this in my lifetime.

I say this, because I feel we still have so far to go. For as long as I can and as long as I am able to make a difference, that is exactly what I will do until my time here on earth is through. I am so thankful for the families I have met and the ones I still long to meet. I am thankful they have shared their stories with me and allowed me the honor to help them. I will forever be grateful to all of them for they have shaped me in to the person I know I was meant to be. I may be the Founder of The Butterfly Fund, but I feel more like the "messenger" of it. To put it simply, I cannot do this alone and I never started The Butterfly Fund to prove anything to myself or anyone else. I just wanted to provide a path to make a difference in the lives of children who are at the moment as fragile as butterflies. I know with all that I am, and all that I believe in, we can do this and we will do this.

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