A Q&A with Photographer Christie Zink of This Little Light, Part II

Last week, we began our conversation with photographer Christie Zink of Elan Images and discussed her growing work as an EB advocate, in particular through This Little Light, her nonprofit organization launched late last year. This week, we get to the heart of her dedication to raising awareness and research funding as we learn about her recently successful I Refuse campaign and participation as a co-captain for PUCK’s recent team effort at the Children’s Cancer Research Fund benefit walk Time to Fly. Please note: the Time to Fly event has since taken place but had not at the time of this interview. Christie was able to raise over $12,000!

 

EB Resource (EBR): One of the ways you’ve gotten more involved with supporting EB families and research efforts beyond your photography with This Little Light is through other awareness campaigns you’ve launched like, most recently, the I Refuse campaign. Can you share a little bit about how that came to be and the goals behind it?

Christie Zink (Christie): It’s become way bigger than I anticipated. It was before Christmas, and I had just gotten back from Louisiana again. One of the things that started happening as I got more involved was I would get messages from people who would say, "It’s so amazing what you’re doing, thank you," and I was so humbled by that. I was never and I still don’t ever think I’m doing anything extraordinary. I’m doing what needs to be done and following my heart, and doing what my heart tells me to do. But other people would send me messages that were not so nice …

 

EBR: Really?

Christie: Yes, I would get messages saying that I was exploiting the kids or using their situation for my own self gain. It always was so hurtful. And don’t get me wrong: the amount of positive messages I got completely outweighed the negative, but of course the negative ones are the ones that tend to stick with you sometimes. It was late one night, and I had gotten another negative message, and was really frustrated by the number of negative messages, I just made a Facebook post that said basically some people ask me why I do this and most people understand that it’s a positive thing but there are some people who are misguided, and I posted a video of a little baby and said, "This is why." And after that, someone posted a song on my page and said, "I want you to listen to this song, it reminds me of you." And I listened to it and started balling because it hit me so hard. And for the next two or three hours, I made a video with my pictures of these kids and, in days, created a Facebook event and started to do this. I thought I’m going to do something. We sold almost 400 of the first set of awareness kits, and now for this next one, I’ve got 200 more orders. And we’ll probably do another one. It’s pretty amazing, the support I’ve received and the people who are so willing to be a part of it. I was thinking maybe I would sell 50 shirts and now it’s kind of become a movement. We’re working on some different things to try to continue the momentum to make it bigger, and I have several people who are going to have events in their community using "I Refuse.” I feel like whenever you have the passion and desire, you can really achieve great things. I don’t have any intention of giving up.

 

EBR: What are you hoping to achieve?

Christie: There are three things that are so important to me: Supporting the families, because these families go through tremendous challenges, and there’s no way to sugarcoat it: this disorder ravages the babies inside and out and takes a toll on the people who have to care for them. It is an emotional journey. Trying to spread awareness is important to me, because the more aware people are, the more dollars go to research. And then obviously, I want more than anything for them to find a cure.

 

EBR: Late last year, a debate began in online communities like ours about whether or not sites like Facebook should be able to take down images of children with EB that it deemed too graphic because they do show the toll that EB physically takes on these children’s bodies, and it became quite a topic of debate for some time. What are your thoughts on the issue as a photographer and someone who often works with these families personally, assuming of course that their families have given permission to display the photos?

Christie: I have to honestly say that I feel that people need to see that. They don’t want to see what’s under the bandages. They would prefer to see the baby bandaged up. But in order to understand the brutality that these kids face every day, they have to know what’s under there. And if you don’t want to look at it, don’t. I know from personal experience that I have people who were friends with me on Facebook who aren’t anymore, and that’s fine. I understand. It is graphic. The same people will go out to watch a real graphic movie, but the difference is that’s fake. This is real, and they don’t want to see it. I really feel like people don’t want to know that this pain exists, but it does.

 

EBR: We saw that you are also taking part in the Time to Fly fundraiser with PUCK. Are you normally a participant in these kinds of race events?

Christie: No, the event itself for Team PUCK is a walk. I’m running as a personal challenge. My goal is $10,000, but I don’t know if I’ll get there. Right now, I’m at a steady $8,000.

 

EBR: Why was it important for you to join that effort?

Christie: I had decided that I was going to run in memory of Tripp Roth and Bella Ringgold and to honor Quinn Seymour, who has since passed away. For me, the work that Dr. (Jakub) Tolar and Dr. (John) Wagner do at the University of Minnesota is so critical and it’s so imperative that we do something. I knew that people in the EB community who followed Tripp also knew who I was, and I wanted them to know about this research in Minnesota. I want them to be able to find a cure and give these kids a chance at a better life. Tim Ringgold, the director for PUCK and such an inspiring man, contacted me about being one of the captains, and I had to recruit 10 people with a goal of $250 each.

I was getting a lot of people involved in Louisiana and not here. There are people in Minnesota who have EB and nobody here knows about them. Nobody realizes the important research being done. I wanted to get people in Minnesota involved. And this research is not all for EB. The bone marrow research helps many people with many different disorders. As I got involved with Time to Fly, I thought I could use another Facebook page of mine, EB Part of the Cure, which has over 2,000 fans, to be a catalyst to get people involved in Time to Fly. I was able to recruit over 20 people, and they didn’t know that this research and PUCK were here. This was a good opportunity to make people aware. My hope is that they would continue to do something beyond this event.

 

EBR: I noticed that you work with a lot of different EB organizations and not just one.

Christie: Yes, I do. I support EB families whether that be through DebRA, PUCK, EBMRF or JGSF. I would want nothing more than for everybody to work together because the reality is that we all want the same thing. These families need support. I’m not going to not do something because it’s for a particular organization. I want the families to be supported and I want these organizations to come together to do that.

 

EBR: How has learning about EB and meeting these families and, in particular, these young children with whom you’ve interacted and photographed changed anything for you in your own life or relationships?

Christie: These kids help me to be a better person. Tripp was my first experience with EB, and I’ve always said that he changed my life. Him, his life and what he went through helped me to be a better mom, to not take my kids for granted, to appreciate my kids, to not sweat the small stuff. My focus has totally changed. I see a lot of posts from people complaining about things that seem so petty, and I just thank God that I have had the opportunity to be touched in such a way that I know that I’m blessed. When I first saw Tripp in person, the trepidation I felt going into the house was pretty intense. I had no idea what my reaction would be, I thought I was going to fall apart, but I walked into that room and the second I turned my head and saw him, I felt such incredible peace … I watched Courtney and Tripp, and the ebb and flow of their love for one another, and it just transcended everything I knew completely. I thought about my kids, and I knew that I needed to make a change and wanted to make a difference. And the other thing I love is that my children are learning about compassion in a way that I couldn’t have imagined. It allows me as a parent to give my children experiences that will hopefully cultivate them to be loving, caring people.

Add These Events to Your Calendar

We were excited to learn about a handful of great EB fundraisers and awareness events taking place this month and wanted to give a shout-out to the planners as well as spread the word to the community. If you’re going to be in the area, be sure to show your support. If you know of someone else who is – family, friends, maybe even your own faraway Facebook friends – consider sharing this blog with them so they might honor you by attending an event to help support research efforts or offer direct assistance to those impacted by EB.

If we’ve left off any events for this month or next, please share your event’s information here in the comments or on our Facebook page. Thanks!

  • Lilly Pulitzer Private Shopping Event (New York, NY)
    This event is scheduled for Thursday, May 10, from 6 to 8 p.m. and hosted by DebRA at the Lilly Pulitzer located at 1020 Madison Av. at 78th St. The evening will include refreshments/snacks and provide attendees the opportunity to shop the Manhattan store privately with 10 percent of all sales being donated to DebRA. But you must RSVP first to participate. To register, email casey@debra.org or call 212-868-1573, ext. 105. Click here for more information about this event.
     
  • Jogging for Jonah (Clemmons, NC)
    Lace up the sneakers to raise funds for DebRA at a 5K Walk/Run or 1 Mile Fun Run being held Saturday, May 12, at Tanglewood Park, 4061 Clemmons Rd., with first race to begin at 8:30 a.m. The event is being held by the Williams family in honor of their 3-year-old son Jonah diagnosed with EB shortly after birth. May 1 is the registration deadline, so if there’s a chance you will be in the area a few weekends from now, sign up right away. Race costs $20 to participate and includes a race T-shirt. Click here to register for this event and get additional information.
     
  • Love for Lucas Bowling Party (Avon Lake, OH)
    This fundraiser for DebRA takes place Saturday, May 12, at 5:30 p.m. at Speyock’s Nautical Lanes, 184 Miller Rd. As the Hardman family posts on their website www.love4lucas.com, it is an event to honor their late son Lucas Patrick who passed away from Junctional Herlitz EB at five weeks old last June. Tickets for the fundraiser cost $25 per person (children age 10 and under are free). The night will include bowling, shoe rental, pizza and soda, and participants can also take part in silent auctions and raffles. Click here for more information about this event.
     
  • Butterfly Wishes for Ellie Benefit & Silent Auction (Atlanta, GA)
    This sixth annual event promoted in honor of its 6 year-old Ellie Tavani, is scheduled for Wednesday, May 16, from 6:30 to 10:30 p.m.. at Park Tavern, 500 10th St. N.E., Midtown Atlanta. The family posts at its website (www.butterflywishesforellie.com) that it hopes to raise $30,000 for DebRA this year at this event, which includes a silent auction, as well as “Dinner & Dancing Under the Stars.” If you will be in the area or know someone who lives in the Atlanta metropolitan area, please pass along the information. Guests can also contribute if they are not able to attend in person. Tickets are $75 per person, with RSVP requested by May 9. Click here for more information and to register.
     
  • Wine and beer tasting (Eaton, OH)
    This fundraiser is being held Saturday, May 19, from 7:30 to 11 p.m. at Taffey’s, 123 Main St. in Eaton and features a concert by Scott Paul Davis & Co. Tickets are $20 per person with proceeds to benefit DebRA of America. For reservations, call 937-456-1381, and for directions, visit www.taffysofeaton.com.
  • Time to Fly 2012 (St. Paul, MN)
    Pioneering Unique Cures for Kids (PUCK) has assembled a team to participate in the Children’s Cancer Research Fund’s Time to Fly 2012 event taking place Saturday, June 30, at Harriet Island Regional Park in St. Paul. If you’d like to cheer from the sidelines in person or virtually, visit the group online at www.puckfund.org to donate or learn more about the group’s mission to raise funds for EB research. For more information about Time to Fly, click here.
     

Upcoming Events & Fundraisers

From time to time, we like to let the rest of the community know about upcoming EB fundraisers, educational events and campaigns we hear about that are taking place across the country. These help raise EB awareness and, in some cases, dollars for support and research. Here are just a few events we’ve discovered that are happening during the next few months.

  • Rafi’s Run (New York City, NY)
    This 5K walk/run event is scheduled for Sunday, March 11, at 10 a.m. (rain or shine) at Riverside Park on 103rd Street, Upper West Side of New York City. Those who register to participate as runners or walkers are asked to try to raise at least $500 in donations. There are other ways to support the event, such as sponsorships and donations. Proceeds from the event will benefit DebRA of America. The main message on the home page is "the cost of doing nothing is too great and success is in the doing," and we couldn’t agree more. For additional information about the event or how to get involved, visit www.rafisrun.com.
  • Butterfly Benefit Fashion Show and Silent Auction 2012 (St. Mathews, KY)
    This annual event is taking place Saturday, March 17, at The Olmsted, 3701 Frankfort Avenue in St. Matthews. Event features a silent auction, which begins at 11 a.m., and lunch at noon, followed by a fashion show. The event supports DebRA’s New Family Advocate Program, which provides assistance to new EB families by sending them a care package full of EB-friendly wound care products and practical information about wound care and other important EB care issues. The program also enables the family to receive a home visit from an experienced caregiver after the family brings their new baby home. Those interested in purchasing tickets can click here for online registration.
  • Beer and wine tasting (Eaton, OH)
    This fundraiser is scheduled for Saturday, May 19, from 8 to 11 p.m. at Taffey’s, 123 Main Street in Eaton and features a concert by Scott Paul Davis & Co. Tickets are $20 per person with proceeds to benefit DebRA of America. Call 937-456-1381 for reservations. For directions, visit www.taffysofeaton.com.
  • Time to Fly 2012 (St. Paul, MN)
    Pioneering Unique Cures for Kids (PUCK) has put together a team to participate in the Children’s Cancer Research Fund’s Time to Fly 2012 on Saturday, June 30, at Harriet Island Regional Park in St. Paul. Supporters can join the team, cheer from the sidelines, or acknowledge their mission to raise funds for EB research by making a donation online at www.puckfund.org. For more information about the Time to Fly event, click here.
  • 2012 Patient Care Conference – Countdown to a Cure (Orlando, FL)
    Families facing the challenges of EB can sign up for this bi-annual event sponsored by DebRA being held Monday, July 30, through Thursday, August 2, at the Gaylord Palms Resort in Orlando. Guests will be able to meet other families, learn more about trends in care and research related to EB, and enjoy the best of Florida without having to step outside at this beautiful indoor resort. The schedule continues to be updated, but patients and family members can click here for PCC 2012 registration and early agenda information.

Do you know of any upcoming events or fundraisers benefiting a local family living with EB or an EB-focused organization? If so, email us all of the details at leslie.rader@hollisterwoundcare.com. And if your event is being held sometime later this month or next, leave a comment here or on our Facebook page with details and a link to more information!

Year’s End Celebration

We’re just days away from 2012, and we always love using this time to reflect on the good things the current year brought to us – maybe it was new people, a fresh perspective on a subject or added knowledge or activities that helped us learn and grow in some way or another.

What are you celebrating at year’s end? A new job? A victory for the family? Maybe it’s not an obvious piece of “good news” but more about a new understanding or acceptance of something in your life. Peace of mind and resolution are always meaningful causes to celebrate in our book!

So we want to take this time to say thank you to everybody who in some way has contributed to EB Resource this year– whether it was contributing a personal story or information for one of our blogs, becoming an active part of the Facebook community or re-tweeting our updates on Twitter. Let’s toast the old year as we usher in a new one.

  • More community growth. We watched our EB Resource Facebook community grow yet again from nearly 800 members at the start of the year to just under 1,000! Many of you have introduced what we’re doing to friends, family and co-workers who have since friended us, too, and support the community in their own unique way, and for that, we thank you.
     
  • Steady interaction. It’s been so exciting to be a part of a relevant, ongoing conversation that has shown no signs of slowing down, and one with so many caring people lending their voices. Sometimes we launched the topics and other times, members posed important subjects for discussion. This has been an organic process from the start, and we can’t wait to see new ways we’ll connect with one another during the new year.
     
  • More and more voices in the blog community. Each year, we see a growing number of voices join the blogging movement. This is certainly not a new avenue for expression but one that can be particularly timely and critical in our community, with so little information or discussion available in mainstream media about EB. We won’t begin to take credit for encouraging more bloggers to open up their WordPress and Blogger accounts, but we do feel an itsy-bitsy sense of pride that some of our EB Resource Facebook friends are among those who’ve launched these new blogs. So we hope we’ve at least been influential in your decision and will continue to call on others to speak up if they have something to say.
     
  • Even more fundraisers for EB causes. As great organizations like EBMRF, DebRA, the Butterfly Fund, PUCK and others find opportunities to create larger-scale events and campaigns, we are beginning to see more and more families and communities at a grass roots level launch their own community-based awareness events and fundraisers. This is wonderful news, because it starts at the neighborhood level, helping others become familiar with what EB is, what it looks like, what it means for those impacted and how others can help in basic ways to make a difference. So kudos to those who took the leap and launched their own first annual event this year. Keep us in the loop about your second annual events in 2012 so we can help you spread the word!
     
  • The love Tweets. Thank you again, everybody, for re-tweeting and spreading the word during our recent second annual EB Awareness Tweet-a-thon. Hollister Wound Care was able to donate $2,500 to DebRA of America as a result of those who pitched in, taking the time and care to share messages with their own followers. Just think about how many new people were introduced to the topic for the first time because of your interest and energy. We can’t thank you enough!

As you get the funny-looking hats, party horns and champagne flutes ready for the new year, take the time to reflect on your own personal victories and challenges, and where you’re headed. And we’ll look forward to connecting with you in 2012!

We “Heart” These EB Champions

Valentine’s Day may have come and gone, but we thought it was the perfect time to celebrate what some of the voices in the EB community are doing to speak up and be heard at a local, national, or global level. We love what these wonderful EB champions are doing to try to make a difference in the lives of patients and their families by getting the word out about a disease that many in the medical and scientific communities are still not talking about. Let them inspire you to determine what you can do to join in with your voice.

  • PUCK, Pioneering Unique Cures for Kids
    After nine-month-old daughter Sara, who had been scheduled to take part in a University of Minnesota bone marrow transplant research trial, died from complications of the disease before participating, her parents Jay and Lonni Moreland continued to stay involved in the study. Upon learning that five of the study’s seven participants were showing signs of improvement, the couple relocated from California to Woodbury, MN to be closer to the University’s research team and launched the foundation PUCK, Pioneering Unique Cures for Kids, to benefit disease research for EB and other rare diseases.
  • Tyler Jones
    Last fall, Tyler Jones, a 14-year-old from Murray, KY born with EB, was inspired by National EB Awareness Week to create his own opportunity to educate others about epidermolysis bullosa. He and his mom, Rachelle held a campaign to sell purple EB bracelets to raise money for DebRA at the Nov. 5 Murray High School football playoff game and shared information about EB with others. Tyler’s just one example of some of our younger voices in the EB community speaking up to make a difference.
  • Timothy Ringgold
    If you’ve been reading about EB for some time, you’ve most likely come across Timothy Ringgold’s name. Author of Bella’s Blessings and father to Annabella, its inspiration who died just shy of seventeen months old following complications from a bone marrow transplant as part of the same University of Minnesota research that inspired PUCK, Ringgold has been an active speaker and fundraiser in the EB community for a while. Through his regular blogs at the Bella’s Blessings daily blog and a Team Bella video series posted on YouTube, the mourning father has been very open and candid in sharing his feelings about the loss of his daughter and has channeled that grief into encouragement of others to raise funding for EB research and to share their stories.

 

Sources:

“Woodbury Family Hopeful about Disease Research” (Woodbury Bulletin)

“Local Youth Inspiration to Those Around Him” (Murray Ledger & Times)

Timothy Ringgold YouTube Channel

Bella’s Blessings

Related Posts:

Resolve to Speak Up for EB Families

Thankful for These EB Voices

More EB Champions Worth Celebrating

Celebrating EB Family Advocates & Supporters