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!

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.

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

This month, we celebrate a tireless EB advocate who has made a difference in the lives of families impacted by EB in her own unique way. She is Laurie Sterner, professional photographer and founder and CEO of The Butterfly Fund. Each year, her organization, along with her family, hosts The Butterfly Ball celebration and fundraiser to directly support EB families in need. This year’s event is tentatively scheduled for September in Sonoma, CA. To learn more about this annual tradition, visit the organization’s website for information about the event’s history and details for this year’s much-anticipated event as they become available.

Recently, Laurie shared with us a little bit about her own introduction to EB and what compelled her to launch the group. Here is part I of that conversation.

EB Resource (EBR): Laurie, tell us about how and when you first learned about epidermolysis bullosa.

Laurie Sterner: (Laurie): The first time I actually “knew” about EB was after I watched a documentary about 13 years ago called “The Boy Whose Skin Fell Off” – the story of Jonny Kennedy, but this wasn’t the first time I knew someone with the disease. I met a very young boy about 23 years ago who had this terrible skin disease. I didn’t know what it was – all I knew is he was the cutest little boy with this very horrible disease. I remember thinking to myself how sad it was; yet I never questioned exactly what he had. Years went by, and one night, a documentary came on TV and it was about the life and death of Jonny Kennedy. There was the phrase – epidermolysis bullosa – the same disease that this little boy I knew all these years had suffered from. While watching this documentary, I had never witnessed such gut-wrenching pain and suffering before, yet at the same time Jonny’s personality and tenacious spirit made me smile. I honestly have to say that just watching and listening to this young man's story truly changed my life. It touched a place in me I still to this day cannot fully describe with words. I remember asking all my children, who were young teenagers at the time, to watch the video as well. It was at this time that I told all of them that you would never have a reason to complain about anything in life. I watched this young man who suffered every single day of his life and never once complained about anything. To say it inspired me is an understatement. I know it inspired my children as well, as all four of them help us immensely.

 

EBR: What do you feel are the biggest misconceptions about EB and those living with the disease?

Laurie: There are too many misconceptions about EB. The biggest and most painful one (in my opinion) is that it is contagious. Bottom line, it scares people, and it shouldn’t. The other misconception that bothers me  is the fact that too many people think this could never in a million years happen to them. I actually had a mother of two beautiful children tell me how “unfortunate” it was that parents could have a child like this. The other misconception that I have heard too many times is many people don’t realize that so many parents have no idea their child will be born with this disease – they have this pre-conceived notion that parents “know” they are carrying this affected child and should never bring a child like this into the world. I guess there is so much testing for so many other genetic diseases that they feel EB is just another one of them.

 

EBR: So what prompted you to launch The Butterfly Fund, and how long ago was that? What is the main mission of your organization?

Laurie: The mission of The Butterfly Fund is to provide help and support to parents of a child with any catastrophic (life-threatening) illness or event. The Fund was founded in 2009, but we did not become an official 501c3 charitable non-profit until February 2011. So many people think we only help families who have children with EB, but this is not the case. Yes, EB was our driving force. We met so many families and children with EB and were touched beyond words. Maybe it was the unspeakable pain and suffering that EB causes or maybe it’s the smile on these children’s faces through it all … I don’t really know. I met someone who said that they didn’t choose EB … that EB chose them. I had never met this person, yet those words came directly from my heart. Our lives were also touched by children who have had cancer, leukemia, cerebral palsy and other disorders or handicaps. We wanted to include them all – our Butterfly Children – in raising awareness for the disease or infliction they had and to show support for what they were all going through.

 

EBR: How are funds raised through The Butterfly Fund used to help the EB community?

Laurie: One hundred percent of the net proceeds from our annual event go directly to family assistance in the form of financial aid, food, housing, clothing and care. Absolutely no salaries of any kind are paid and we keep our budget very, very low for our event. The Butterfly Fund does not discriminate, and anyone and everyone within the U.S. who has a child with a serious life-altering illness may inquire with us. We knew there were already wonderful foundations out there providing support and doing diligent work to find a cure, but we wanted to focus on the family – to show them we cared about what they were going through and try to help them in any way we possibly could. We don’t focus on the medical side – we focus on the heart side. The funds we raise through The Butterfly Fund are dispersed to individual families and organizations that we feel benefit the most from our mission. Since EB was the driving force for our foundation, we try our hardest to support organizations and other non-profits that work directly with EB patients and the need for a cure. We do our best to contact families that we become aware of through social media, community or personal requests. We offer support to organizations that can help them, and we offer a friendship so to speak. We listen to their requests and help in any way that we possibly can. We felt there is so much awareness for other diseases and it was so unfair that EB did not receive the recognition it so desperately deserves.

 

EBR: What originally inspired The Butterfly Ball, and can you tell me what people can expect at this year’s event?

Laurie: The Butterfly Ball was always my dream. I wanted to see an event that raised money for needed items for families who had sick children … really sick children. Where all the money raised actually went to help the people we said we wanted to help. Where thousands of dollars weren’t spent on decorations or table linens and huge amounts weren’t paid to expensive vendors – where everything was done by volunteers and people with huge hearts. The name came from, of course, Butterfly EB Children, but we felt that any child going through a life-threatening illness or event was fragile, too, just like a butterfly. The Butterfly Ball is a beautiful, sentimental event, with amazing food, live music, silent and live auctions and more! The first two years, we held a butterfly release. That was not only spectacular but also the sentiments behind it literally brought guests to tears. We honor two families each year, families who have a very heartfelt story to tell. All proceeds from The Butterfly Ball are given to families in need within a few months after the event, so the need to raise more funds each year is great. This includes supplies, medical needs, gas cards, food, clothing, transportation, canine companions, and so much more. The list truly is long, and the range of what we purchase and do for families is very, very wide.

Next week, we’ll continue our chat with Laurie as she shares what’s next to come for The Butterfly Fund and how others can get involved.