Second-Chance Blogs

Our year is winding to a close, and we’ve had an opportunity to blog about a wide variety of topics throughout the year. We also have had a chance to introduce our community to some special people who were kind enough to share their EB story and what they are doing to make a difference to expand awareness, raise funding for research and improved treatments, connect people in the EB community to one another — or in some cases, all three!

We know we can get busy and spend time away from our favorite blogs and Facebook pages, so we wanted to take this time to share some links to our favorite blogs we presented throughout the whole year. Think of it as a second chance, in case you missed the update the first time around. And if you did read it and enjoyed what you saw, consider sharing it with a friend or even re-reading.

And thank you to the following people who allowed us to share their own EB story or special connection to the EB community through their organizations. The links to these two-part conversations have been included, as well.

We’re excited about a new year ahead – new things to learn and share, new topics to cover and new conversations to hold with other valuable voices in the EB community. We always welcome ideas for future blog topics, so if you have any you’d like to suggest for 2013, please email leslie.rader@hollisterwoundcare.com. We love hearing from you!

Looking Back at This Year’s PCC

It’s hard to believe it’s already been over a month since PCC 2012, but I did want to share some thoughts about this year’s event and some of the feedback that I received from families in attendance both while I was there and after I returned.

The venue, the Gaylord Palms Resort and Convention Center Orlando, was ideal for the event that continues to grow each time DebRA hosts it. In fact, I heard that we had about 80 families attending, which is our largest number ever, as some families also brought along extended family members and their caregivers, too. Between all of the attendees and the speakers providing this year’s presentations, we had at least 300 people enjoying the safety and security of the indoor hotel that was a great way for kids and their families to feel like they were outdoors with all of its greenery and vast amount of space and not have to worry about the damaging effects of the sun or heat.

Overall, the agenda was packed with well-thought-out topics, and things flowed smoothly during the conference. It was well-organized, and I was really happy to see so many new topics being discussed that had not been addressed before. In particular, I heard really positive feedback about some of the presentations on the latest research trials and headway being made clinically. I was happy to see some other interesting and relevant topics such as pain management, and a presentation by Dr. John Saroyan and Dr. Traci Stein during which they shared some more holistic approaches to pain management, including meditation and visualization.

I do wish that I could have popped into some of the presentations more often to hear the speakers that conference attendees spoke so positively about, but as always, I enjoyed getting to meet with the families, especially those whom I had not met in person before. And it was great to re-connect and in some cases meet for the first time some familiar faces who are getting involved in the EB community as advocates supporting patients and their families, such as Laurie Sterner (The Butterfly Fund), Jamie Silver (Jackson Gabriel Silver Foundation), and Christie Zink (This Little Light).

I also heard that many families got a chance to meet in person with other families that they had previously just interacted with online, via Facebook, EB Friends, or email. Occasions like the PCC are really as much about the connections being made and developed as they are about the information shared.

When parents were attending sessions during this year’s event, you could spot teens exploring the hotel or attending their own breakout session during the conference. You could also see the little ones were having a blast in the monitored Kids Room playing games, listening to tales by a professional storyteller, meeting up with a magician, and hearing from a professional wrestler who shared his own early experiences about being bullied as a kid and how he overcame these obstacles and learned to embrace what made him different. Families had a chance to meet some of the Gaylord Dreamworks characters during “meet and greets” throughout the hotel during the conference and take in dinner and a fantastic Cirque du Soleil show “La Nouba” as this year’s offsite outing sponsored by Hollister Wound Care.

So from the conference layout to the venue to the additional events and timing of all that was planned, I think overall everyone was happy that they attended the PCC, and personally, I was pleased with DebRA and their staff, and all that they did to plan such a fun, comfortable and relevant event for everybody involved. I’m not sure where they will be holding the next PCC, but I suspect–given the positive feedback many of the PCC attendees voiced while there–that other Gaylord properties would certainly be considered. In the past, DebRA has alternated locations from East Coast to West Coast each year, so I would assume that the next one planned would probably be in another region of the country, but that information has not been announced.

I heard from some families that they had wished there had been a little more time at the end of speaker sessions for more Q&A, so perhaps that would be one way that future presentation schedules could be adjusted to ensure the attendees really have the opportunity to get their main questions answered. But generally speaking, the positive feedback was overwhelming, and we saw quite a bit of it on the DebRA Facebook page, our own EB Resource page, and at my own personal Facebook page about how much fun everyone had and how much they learned, too.

On our EB Resource page, The EB Advocate happily noted, “Our team enjoyed seeing Shrek at breakfast. He is much taller than we pictured.” On my Facebook page, Elizabeth Schwartz shared her enthusiasm and appreciation for the family outing: “I wanted to thank Hollister for a wonderful and magical night during the EB PCC … Dinner at Planet Hollywood and the La Nouba show was so well coordinated not to mention all the buses that transported the families back and forth.” Faye Purpura Dilgen kindly wrote, “Big hugs of thanks to my EB moms out there who smile with their eyes and pour love and determination from their hearts. I see you with your kids and it gives me hope that I can get through this disease with you …Thanks to DebRA for bringing the world experts in EB research together to show us that hope.”

If you attended this year’s PCC and haven’t chimed in with your thoughts yet about the event, please take the time now to do so here or on our Facebook page.

Thank you again, DebRA, for a wonderful job bringing together many in the EB community for another very special event.

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.

Kudos to These EB Champions

As you already know, one of the greatest challenges for the EB community is getting the word out about epidermolysis bullosa, so when well-known celebrities or a group of people committed to the cause step in to make something happen, we think it’s a beautiful thing. Here is a great trio that has done just that.

  • Patti Hansen
    Remember ’70s supermodel and wife to Rolling Stones rock legend Keith Richards? We were so excited to hear that Patti Hansen’s recently unveiled talent of making designer handbags for Hung on U was attracting Hollywood attention. But we were ecstatic to learn she was using all of the buzz to partner with EBMRF to raise funds for EB medical research by donating 15 celebrity-customized Hung on U bags for an online auction hosted by Charity Buzz. We say that embracing your style and fashion while supporting a great cause is a win-win. Thank you, Patti!
  • The Butterfly Fund
    This organization, led by founder and executive director Laurie Sterner, initially began with the purpose of raising awareness about EB and the need for support for those who suffer from the disease. Since then, the organization has grown to include support for children diagnosed with any serious life-altering disease or condition. For all Butterfly Fund events, all proceeds go directly to those families being supported, with no paid employees among the group’s team of supporters and volunteers. With food, housing, clothing, care or financial assistance, EB families are helped directly through The Butterfly Fund. This December, the group hosts its invitation-only gala, the 3rd Annual Butterfly Ball in Sonoma, CA. (For details, visit www.sonomabutterflyball.com.) We applaud The Butterfly Fund for all that it does to continue raising awareness and funding for EB families.
     
  • Delta Tau Delta Fraternity at Southeastern Louisiana University
    When we learned in late September about a fraternity chapter in Louisiana that had embraced the cause of EB Awareness as one of its missions, we knew we had EB champions in our midst! Fraternity president Brandon Colletti and his brother members of the Delta Tau Delta Fraternity of Southeastern Louisiana University launched a fierce campaign to raise funds and public support for the Roth family of Ponchatoula, LA, and specifically two-year-old Tripp, who has EB. Once the fraternity brothers learned of the expensive day-to-day costs for EB families, they set out to promote their popular fundraisers, known as Delts-do-a-Thousand, with not one, but two campaigns to raise support for Tripp and his family. The group led a three-day fundraiser by shaking cans and riding an exercise bike to collect spare change—in the spirit that every little bit of help matters. And we say, yes, it does. Kudos, Delta Tau Delta, for reminding us!
     

Sources:
“Patti Hansen’s Hung on U Line Debuts at Barneys New York” (LA Times)
Hung on U
The Butterfly Fund
“Fraternity Helps Child with Rare Disease” (The Lion’s Roar, Southeastern Louisiana University)

Related Posts:
EB Champions, We Salute You!
Celebrating Moms Making a Difference
We Appreciate These EB Champions

Upcoming EB Events & Fundraisers

With EB Patient Awareness Week (October 25–October 31) less than two months away, we want to know: have you gotten plans in place to launch your own neighborhood, community or school fundraiser or awareness event? We’ve heard about a handful of fundraisers and events going on around the country and wanted to let you know about them.

  • 4th Annual Midwest Picnic for EB Families (Palatine, IL)
    Families in the north central part of the U.S. get an opportunity to meet up and take part in fun family activities at this lunch event taking place Saturday, Sept. 10 from noon to 4 p.m. at the Falcon Park Recreation Center, 2195 N. Hicks Rd. in Palatine. Lunch will be provided; families are encouraged to bring desserts to share. Visiting families also will get to meet event guest Dr. Amy Paller and physicians from her team at Children’s Memorial Hospital (Chicago). Click here for this public event’s Facebook page for more info.
  • Kendall’s 2nd Annual Walk/Run (New Albany, IN)
    Those looking to support EB patients and their families can take part in this fundraiser in honor of Kendall Lanham, a 13-year-old with RDEB, being held Saturday, Sept. 17 from 8-11 a.m. at Sam Peden Community Park, 3037 Grant Line Rd. in New Albany. Proceeds from the walk will go to the Cincinnati Children’s EB Family Crisis Fund to help assist patients and their families. For additional event information, go to its Facebook event page here.
  • Mats Wilander Celebrity Tennis/Golf Classic (Rye, NY)
    Next month, tennis legend Mats Wilander and his son Erik will host their 13th annual celebrity sports event Monday, Oct. 17 at Westchester Country Club in Rye. The 2011 fundraiser will begin with a morning tennis clinic run by Wilander, John McEnroe and other tennis professionals. Afterwards, guests will be able to enjoy 18 holes of golf with TV, movie and sports celebrities. For more info or to register, click here for additional details. Proceeds benefit DebRA of America.
  • A Night of Discovery and Healing EB (San Jose, CA)
    A California couple are hosting an EB fundraiser/awareness event on Friday, Oct. 21 from 6-10 p.m. at the Children’s Discovery Museum, 180 Woz Way in San Jose. All proceeds will benefit Stanford University’s EB research efforts. Event will include light appetizers, live music and a silent auction. For additional info or to become an event sponsor, visit the event’s Facebook page or contact Heather Fullmer at 310-722-9174.

  • First Annual Aubrey’s Butterfly 5K Run (Dimondale, MI)
    Supporters are encouraged to sign up to participate in this new fall fundraiser race making its inaugural run Saturday, Oct. 22 at Dimondale Elementary School, 330 Walnut St. The event pays tribute to the late Aubrey Joy Oberlin. Registration starts at 8:30 a.m. with the 5K walk/run to begin at 10 a.m. $20 adults and $10 kids before Sept. 23. Proceeds from the race will benefit DebRA. To register or learn more about volunteer and sponsorship opportunities, visit www.aubreys5k.com.

  • Action for Jackson 2011 (New York City, NY)
    The Jackson Gabriel Silver Foundation has posted on their website news of this second annual event being held Wednesday, Oct. 26 at Doubles, a private club at the Sherry-Netherland Hotel, 781 Fifth Ave. in New York City. Event begins at 6:30 p.m. and will include an open bar, hors d’oeuvres and auction. Tickets cost $150 each with proceeds raised going toward EB research at both Stanford University and the University of Minnesota. To request being added to the mailing list to receive an invitation, email Jamie Silver at jsilver@jgsf.org.

· Sonoma Butterfly Ball (Sonoma, CA)
The Butterfly Fund has scheduled its third annual event for Saturday, Dec. 3. Details of the private fundraiser’s time and location will be made available to attendees at this invitation-only event. To request being added to this year’s guest list, click here to complete the group’s contact form at their website.

Are there EB Patient Awareness Week events taking place in your community this October or other events planned for later this year? If you know of any other events, please provide details here at the blog and on Facebook. We encourage you to share the news with the whole EB Resource community. Thanks!

Sources:
Debra of America
Aubrey’s Butterfly 5K Run
Jackson Gabriel Silver Foundation
The Butterfly Fund

Related Posts:
100 Links for EB Families
Join the EB Resource Conversation
Plan Now for EB Patient Awareness Week 2011