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.

3 comments

  1. Laurie says:

     What??  You are too sweet and all I can say is DITTO my girlfriend…DITTO.

  2. the moderator says:

    Thanks for commenting Andrea!

  3. Laurie is one of my all-time mentors and inspirations. xo

    -Andrea Ness