Gearing up for Patient Care Conference

It’s hard to believe that DebRA’s 2014 Patient Care Conference is only two weeks away! The PCC is such a significant event for those in the EB community, and it offers families and those diagnosed with EB a chance to meet and learn from one another as well as interact with and hear from EB advocates and respected members of the medical field discuss the latest treatment and research news. Although registration is closed for the event, there is still time to get prepared for this upcoming event which only takes place every other year.

This year’s event is scheduled for Wednesday, July 30 through Saturday, August 2 at the Gaylord Opryland Resort & Convention Center in Nashville. The 2014 agenda features a variety of speakers who will talk about such topics as bone health, oral care, genetic testing, blood and marrow transplantation and much more. For a glimpse at this year’s preliminary agenda, click here.

There will also be an area for guests to meet exhibitors, such as bandage manufacturers like Hollister Wound Care and others. I encourage you to stop by the exhibitor area. It can also be a very valuable use of your time. It’s a great opportunity to pick up samples of products you may have heard of but not yet tried, or to ask questions and become more educated about products you’re already using or considering.

As in past years, DebRA organizers have thought ahead and set up some wonderful activities for the children to take part in while parents are attending presentations with well-stockedl playrooms onsite. Kids will have the chance to play together and enjoy games, movies, toys, books, arts and crafts right there near the main conference area. There will be volunteers overseeing the playroom at all times though kids under five years old will need to be accompanied by an adult. At every PCC there is a unique family event planned, and this year it’s a field trip on the General Jackson Showboat to take place Thursday, July 31 from 1 p.m. to 6 p.m.

Anyone who has ever visited a Gaylord hotel knows that these are unbelievably beautiful and large hotels with such a lush and comfortable environment and beautiful indoor botanical gardens, cascading waterfalls, and plenty of places to stop by and see onsite, so it promises to be a fun event for all.

I’m excited about this year’s event and getting a chance to meet everyone, to see some familiar faces, and become acquainted with some new members of the EB community. And I’ll be sharing some thoughts about this year’s event later on this summer but if you’re unable to attend, you can keep up with it daily on a variety of social media including DebRA’s Twitter and Facebook pages. And if you are going, they’ve asked any of us who might be doing some tweeting or Facebook posts of our own to use the hashtags #debraPCC and #EBawareness.

For more information about this year’s event, you can visit the main PCC page at www.debra.org/pcc2014. If you see me there, be sure to stop by and say hi. I look forward to seeing everybody soon!

Reflections on 2013

 

Whenever a year ends, we might feel compelled to look back on it and reflect on what happened – the victories, lessons learned and other memorable occasions. For us, 2013 was a pivotal year for the EB community and also for EB Resource, too.

 

We saw researchers continue pursuing research findings for a variety of EB-focused clinical trials already in progress. Organizations like DebRA of America, EBMRF and Jackson Gabriel Silver Foundation continued to spear efforts to raise awareness, funding for EB clinical research and support for the EB community. Planning for the Patient Care Conference got underway as details of next year’s event, July 30-August 2 in Nashville, Tenn., were announced.

 

In 2013, I moved from a member role on the Board of Trustees at DebRA of America to that Board’s President. The greater role and involvement has been a lot of work but exciting to be part of such a forward-thinking organization and I’m honored to be working alongside the other Board members and DebRA’s executive director Brett Kopelan.

 

Unfortunately, every year of triumphs and celebrations brings some sadness, too, and each time we would hear of another member of the EB community passing, we felt a sense of personal loss, which also brought many of us closer together to continue to fight for greater awareness for the disease.

 

What will 2014 bring? It’s hard to say for certain but I know as we all go forward, we’ll find new avenues for reaching out to others to educate them about this little-known disease and we’ll find other ways that we can be supportive of each other using the knowledge and resources we have and new ones that we collaborate on or create altogether.

 

We wish all of you a bright and beautiful new year, from our family to yours.

 

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

We first learned about the work that Christie Zink of Elan Images was doing when Courtney Roth shared beautiful photos that Christie took of Courtney and her son Tripp. It was a beautiful, intimate look at a mother and her child who had been through so much together and who clearly shared such a deep affection and love evident in the images. We began to see more work from Christie when she launched a nonprofit This Little Light and began photographing other children with their families who lived with EB every day. We have been impressed with this talented photographer, wife and mother of three from Minnesota who continues to discover new, creative ways to touch the lives of many and raise awareness about EB and the need for research funding.

We recently talked with her and will be featuring excerpts from that conversation this week and next week. In part I, we asked what led to her involvement within the EB community and, in particular, her decision to launch This Little Light.

 

EB Resource (EBR): How long have you been a professional photographer?

Christie Zink (Christie): I did it on the side for a long time as a hobby. When my son was born in 2006, my husband and I had made the decision that I would not go back to work, that I would stay at home, and it gave me the opportunity to play around with photography a little bit. It did not occur to me until my second son was born that I should make this a business. It had always been something that I wanted to do, just never thought that I could. I started to do a little bit of everything – weddings, events – but over the last year or two, I decided that my passion was really with children. There’s something about photographing children – they have this innocence about them and their personalities. It brings me so much joy when I look at the images and also when you have a parent who is overjoyed that you are able to capture everything that they think their child is.

 

EBR: You mentioned having a second son, too. You have three children, right?

Christie: I do. Ethan is going to be six in September, Noah will be four in September and my daughter Sydney will be two.

 

EBR: Do they understand what Mom does for a living and your work with EB families?

Christie: Oh yes, Ethan and Noah absolutely get it. If someone asks them what Mommy does, both of them would say, "Mommy takes pictures and she really cares about epidermolysis bullosa." They definitely know what Mom does and what her role is. They have their own cameras and they like to take pictures and get creative that way. It’s fun to watch.

 

EBR: Tell me a little bit about how you were first introduced to EB.

Christie: I think most people would love to be able to make a difference or have a positive impact somehow. I have some friends of mine who live in the South, and their daughter went to school with a girl named Courtney Roth, who had a little boy Tripp, and I went out to his prayer page and discovered that she had this boy who was sick. I didn’t really know much about it, but I stumbled across her blog and took the entire night and read the whole thing. In that moment, I knew that this was something I needed to become involved in, so over the summer, I got in contact with Courtney because I felt compelled to reach out to her. I finally got the opportunity to visit in October. A few people from Louisiana had contacted me to help coordinate a fundraiser and it was amazing. I brought my camera with and I asked her if I could photograph Tripp, but I was going to do it just for her. It wasn’t my intention to take pictures of him to share but to do it for her. I had the opportunity to be there during a bath and a bandage change, and I felt a huge connection with him.

When I came home, I talked with my husband about this and said I know I can make a difference. I discovered that in Minnesota there was an organization, PUCK, that was funding research being done here for people who have EB. I had no idea. I didn’t even know EB existed before knowing Tripp. The director of PUCK contacted me one day and I threw out at him what I wanted to do, photographing the children and their families, and started to introduce myself to people. I know now when people are coming to Minnesota. I work with the kids who are at the hospital here getting their bone marrow transplants.

Often, people say they felt called to do something and I always thought they’re just saying that, but now I know what they mean, because every single thing has fallen into place like it’s meant to be. I often wondered why I’m in this cold state, and people always tell me because that’s where these babies are. I’m meant to be in Minnesota. I’m meant to be here to photograph them.

 

EBR: So when did you formally launch This Little Light to begin photographing these children and their families?

Christie: Around November of last year, right after I’d come home from my Louisiana visit.

 

EBR: Do you know how many families you’ve had an opportunity to photograph?

Christie: Six. I’m very excited because I’ll have an opportunity to meet more families in Orlando for the Patient Care Conference in July-August. Connecting with these families and the impact they have on my life and how I live my life is far beyond words. It’s an amazing experience, and I feel so fortunate that the families trust me, because these babies are so fragile. I made a promise before Tripp died that I would definitely not stop what I’m doing, so it’s really launched me into a position where I can advocate. I will continue to do the photography because I love to do that for families You get pictures that you wouldn’t get otherwise – but I know that I can do more.

 

Next week, Christie shares the inspiration behind her I Refuse campaign and about other fundraising efforts in which she has been actively participating.

 

 

Gearing up for 2012 PCC

Have you been to a past Patient Care Conference? If so, then you know firsthand how absolutely fun, informative and special these events can be. DebRA is hosting this year’s event in Orlando from July 30 to August 2 at Gaylord Palms, a beautiful, air-conditioned resort that is also completely indoors, something particularly helpful during Florida summers. The conference will be here before you know it, so before you go, we have some tips to help you fully appreciate the experience and get the most out of your visit.

  • Study the agenda. We suggest planning specifically for which topics and conversations you want to be a part of during your visit, so the excitement of meeting people and the busy schedule each day doesn’t pull you away from a key objective of getting valuable information that you’re seeking. Click here for the most up-to-date agenda posted online.
     
  • Start creating your list of questions now. As you’re going through your daily care routine, keep a notepad handy at all times to jot down any questions you may have as you're thinking about them. And get the whole family involved in the process, including the kids and any other family members or friends who may assist with caregiving functions. PCC is a perfect opportunity to ask knowledgeable people about the many different facets of EB.
     
  • Support your friends by seeking their input. You may have other friends in the EB community who are unable to attend this year’s event. Ask them if they have any questions or topics they would like to know more about. At the conference, if a speaker offers notes from his presentation, pick up a copy so you can share with others when you return home.
     
  • Read up on speakers. Educate yourself about the guest presenters who will be answering families’ questions and their own role and background in the medical field. For example, did you know that one of the leading EB researchers, Dr. Alfred Lane of Stanford, is going to be giving a presentation during this year’s event? There is so much we can learn from one another, and we are really fortunate to have such knowledgeable resources as Dr. Lane and others making themselves available to meet families and answer questions.
     
  • Prepare the kids for the event. It can be helpful to sit down with the family and talk about the conference before your visit, explaining its purpose and what they can expect. They will get to spend a lot of time with other children with EB, and for some, this may be the first opportunity that has taken place, or at least for any great length of time. Encourage your children to have fun and explore in this comfortable environment as they interact with other kids experiencing a lot of the same day-to-day challenges. Remember: as you attend these informative sessions, there will be an onsite PCC Kids’ Room for children ages 6 and older, as well as for children 5 and younger who are accompanied by an adult or caregiver. The PCC Kids’ Room has plenty of room to play with toys, games, music, crafts and more.
     
  • Stock your phonebook with contact info. You’ve more than likely connected with a lot of families around the country who are part of the EB community, and this may finally be your chance to meet some of them in person. But there a lot of people who will be attending this event, so be sure to get any phone numbers beforehand and enter them into your directory before you go. This way, you can connect with them once you arrive at the hotel by calling or texting.
     
  • Charge up the cameras. Whether it’s your digital camera or handheld video recorder, the PCC will offer many great memories for your family to take away, from meeting and playing with other kids in a safe and creative setting to taking part in fun family outings.
     

Do you have any suggestions to offer families who might be attending for their first time? We certainly welcome your tips, too, so please feel free to share them here or on our Facebook page.

 

Spring into Action

Spring. We love this time of year. For some of us, it may represent a season that's all about growth and renewal – spring cleaning, decluttering, blooming flowers and plants. We think it’s a great time to take inventory in other ways, including yearly resolutions and our goals.

This also is a great time to look ahead and make plans for you and your family when it comes to learning opportunities ahead. How can you add to your own repository of knowledge when it comes to EB? Most of us would agree that you can never gather too much information. So what can you do to pay it forward – with what you’ve learned, what you’ve gathered along the way or with any other ways to give back to others?

  • Share links and information — Have you been talking about starting your own blog about living with EB? Why not use this season to finally launch it? What other means could you use to share helpful websites or information you discover along your journey of educating yourself more about EB?
     
  • Donate extra supplies or materials – Occasionally, a family might find that a particular wound dressing or other supply item didn’t work specifically for their own situation, but it just might work for someone else. Inquire with groups like DebRA and EBMRF about ways to share any unopened and unused supplies with other patients and their families.
     
  • Make plans to connect with others – It’s great if you are able to attend DebRA’s Patient Care Conference in Orlando this summer, but if you can’t travel to Florida, why not look into a support group that meets somewhere in your state or a nearby state? Some groups may meet only once or twice a year, but it could offer a really valuable opportunity to get to talk one-on-one with people who completely relate to your challenges. Meet up and share information and experiences, and learn from each other in a completely open and welcoming environment.
     
  • Start planning your future fundraiser – Whether you plan a small springtime fundraiser or invest more time and effort into planning for your EB Awareness Week fundraiser in October, the key is to begin. This is a perfect time to start talking with others in the community about how they can lend their support and get a feel for what kinds of activities might draw attendees to your fundraiser event.
     
  • Recharge yourself – Why? Because you deserve it. If you’re a caregiver, you know how much energy the job requires. If you’re a family member on top of that, the emotional drain can take its toll as well. And if you are living with EB, it’s important for you to find means of building your strength, spirit and energy, and that may mean a low-impact activity that fuels the mind, too, such as swimming, yoga or meditation. You may find true inspiration by exploring artistic means of expression, such as writing, painting or photography. This is a wonderful time of year to invest in yourself because, after all, you have a lot ahead of you, and you’re going to need that stamina and good spirit!

What are some things you can do this spring to refocus your efforts to heal, to learn, to motivate and to inspire others to educate themselves about EB?

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!

Looking Back at 2010 PCC

It’s been a little over a month since the Patient Care Conference, and I’ve seen people still sharing their thoughts about this year’s event in groups like the EB Friends Ning. I have already posted a few photo albums with PCC pics at the Facebook page. Did you get a chance to see them?

This year’s conference was my third PCC that I’ve attended. As you may already know, DebRA holds these events every other year. At previous conferences, I took part as a kid’s room organizer, as part of the New Family Advocate Program, and Wound Care Clearing House for DebRA. This year’s event was my first chance to interact with others as Hollister Wound Care’s Coordinator of EB Affairs. I always enjoy seeing the kids at these events, especially how much they’ve grown. And I especially like listening to the physicians share news about the latest advances in wound care and news about the progress of their clinical trials.

Hollister Wound Care sponsored the kids’ room during the presentations. While speakers like Dr. Arbuckle, Dr. Wagner, Dr. Morel, Dr. Lucky and Dr. Paller were taking the stage, an energetic crew of volunteers kept our younger attendees busy and did our best to make the kids’ room a fun place to be while moms and dads learned from the doctors who were presenting.

This year’s fun side trip was a great success – a trip to the Newport Aquarium. I was glad that Hollister Wound Care could sponsor such a fun event. All of the families had such a great time and kids loved the sea urchin giveaways, too. Several were putting them on their feet, on the control knobs of their wheelchairs, even on their noses! It was hilarious to see the joy on their faces during this fun outing.

What always seems to be one of the most beneficial aspects of the conference is that opportunity to connect – caregivers with other caregivers, parents with other parents and especially, patients with other patients. And the value of attending can mean different things to different people. For instance, for some, the biggest benefit is the information and ideas shared by speakers. For others, it’s the friendships, advice and support that often develop.

If EB families haven’t gotten an opportunity before, I’d strongly urge them to take part in the future at least once and experience it for themselves. But for those who missed this year’s event, there will be DVDs available soon from one of the event’s sponsors, National Rehab, so that way those unable to be there in person can still take away the helpful information provided at the conference.

Were you able to attend this year’s PCC? If so, what did you think? I’d love to hear from you. Please send me your thoughts on what you enjoyed most at this year’s event and any photo links from the event that we can share with the rest of the EB Resource community. Just email me at leslie.rader@hollisterwoundcare.com.

EB Events This Summer

There are several fundraisers and EB-related events being held across the country this summer that offer opportunities to interact with others faced with EB and raise awareness about the skin disorder.

If you know of any other events taking place, let us know. Just send all of the details (date, time, location, cost to attend if it applies and info about the event itself) to Leslie.Rader@hollisterwoundcare.com and we’ll be sure to get the word out to the rest of the EB Resource community.

And if you do happen to attend any of the events we’ve listed and would like to share your thoughts in words or pictures, we’d love to hear from you. Thanks!

June 16-19

2010 Patient Care Conference (Cincinnati, OH)

DebRA hosts this free conference held every other year that enables patients, families and caregivers to hear from medical specialists and vendors about the latest clinical news and research findings and meet with each other to share information.

June 20-25

Camp Wonder (Livermore, CA)

Young patients (ages 7-16) living with painful skin diseases can take part in a fun, FREE week-long camp of outdoor activities like swimming, hiking, fishing and archery and indoor fun, too, including theater and arts and crafts, all sponsored by the Children’s Skin Disease Foundation.

August 1-7

EB Survivors Camp (Park City, UT)

United Survivors with EB (USeb) sponsors this summer camp offering great opportunities for young patients to interact and have fun. To apply for the camp, click here.

August 6

1st Annual Crossgates Golf Outing (Millersville, PA)

Dave Cornman hosts a new golf fundraiser at Crossgates Golf Course with all proceeds going to DebRA for its various programs and services.

August 8-13

Camp Dermadillo (Burton, TX)

Part of Camp Discovery for kids ages 9-15 and located between Houston and Austin in the rolling hills of Washington County, this is a unique camping and retreat facility designed to enrich the lives of people with special needs and is sponsored by the American Academy of Dermatology. And I’m happy to report that this summer I will get the opportunity to serve as a camp counselor there, too!

September 11

2nd Annual Butterfly Ball (Sonoma, CA)

This annual event benefits The Butterfly Fund and Miracles through Music to raise funds and awareness to improve the lives of people living with epidermolysis bullosa. The organizations are currently accepting donations and silent auction items for the event.

What to Expect from Next Week’s PCC

The Patient Care Conference is next week and those who’ve been able to attend in the past can share their own thoughts about the value this bi-annual conference and what it offers EB families. It can be a great opportunity for EB patients and their families to meet with other caregivers, medical professionals and medical supply vendors to get their questions answered and gather helpful information to make wound dressing, bathing and other daily routines a little bit easier.

Here are just a few of the special topics that can be expected at this year’s event:

  • Dr. John Wagner of University of Minnesota will discuss the First Use of Stem Cells to Treat Severe EB
  • Dr. Kimberly D. Morel shares insight about your grocery list and shopping for the right products to support Wound Antisepsis
  • Several doctors from across the country will reveal the latest news about various therapies being studied to treat EB including Protein Therapy, Cell-Based Therapy, Bone Marrow Transplant Therapy and other new therapeutic approaches
  • Dr. Kenneth Goldschneider offers patients and families information about Pain Management Approaches for EB (both pharmacological and non-medical)
  • Other medical specialists will share insight about the day-to-day concerns of EB caregivers including Dental Care, Nutrition and emotional challenges for caregivers and family members.

Besides the speakers and presentations, the truly best part of the conference is getting a chance to talk with other parents and finding out which products they’ve tried that have been effective (or not) and picking up strategies to make the caregiving process a little less stressful. It’s also a great chance for our kids with EB to talk and play with other kids who can relate to the same unique challenges and experiences that they may face – in school, on the playground, every day. And fun extracurricular activities planned, like this year’s trip to the Cincinnati Aquarium sponsored by Hollister Wound Care, give kids the opportunity to do what they do best: be kids!

These are just a few of the relevant speakers and topics scheduled for the 2010 PCC. Click here for the detailed agenda for this year’s conference. When you return from the conference, be sure to share your feedback on the experience here on the blog and in our EB Resource Facebook Community including any memorable highlights or pertinent information that you want to share with others not able to make it. See you there!