CONNECTING AT THE CROSSROADS…AND BEYOND

Indianapolis, Indiana  -  June 20-22, 2014

The 18^th Biennial FIRST National Family Conference took place in Indianapolis, from June 20-22. By all accounts, the three-day event, “Connecting at the Crossroads,” filled with workshops, panel discussions, entertainment, and special opportunities for connection, was an astonishing success, as well as our highest attended conference to date (407 attendees in total)! Also of note, we were delighted that for the very first time, six families with children affected with harlequin ichthyosis had the rare opportunity to finally connect at the family conference.

The gathering unofficially began on Thursday night as attendees sprinkled into the Hilton Indianapolis, filling the hallways, lobby, and restaurants with an air of excitement and anticipation. A wonderful group of volunteers began ushering members who had registered for a clinical screening and/or genetic testing appointment with our volunteer team of physicians, to the designated screening area.  Screenings continued again on Friday morning while the rest of the attendees registered in Monument Hall, each family greeted with an overflowing 30+ pound bag of samples!  Also, during registration, two Indianapolis Colts cheerleaders helped to create a warm and inviting atmosphere, as they assisted the FIRST staff in greeting our guests.

FIRST Board President, Mike Briggs and his grandson Adam Klafter, kicked off the conference with a warm welcome to the attendees and called attention to the mission of FIRST, the returning families, and to all the new families in attendance (65 new families in total!). Members came from all corners of the world including families from Israel,  Canada, Italy, Australia, and Japan! 

Our keynote speaker, Rick Guidotti, then took the stage, his energy permeating the room as he explained his philosophy for “seeing the beauty in all of humanity.” He spoke of the beginnings of his foundation, Positive Exposure, and his recent connection to the ichthyosis community. But his time with us didn’t end there. He co-moderated a teen open-discussion session in the early afternoon, and then spent the rest of the day generously photographing anyone who wished to be photographed, in none other than the parking garage, as the lighting was best suited for photos. Rick is an award-winning photographer, and an admirable humanitarian, that we are truly honored to call our friend. The smiles he inspired at the 2014 National Family Conference will not soon be forgotten.

As the younger kids settled into a fun day of games and crafts at the onsite Kid’s Camp, parents and affected members attended, Specific Types sessions, featuring a medical lecture and ample time for questions and answers. Sessions included, Autosomal Recessive Congenital Ichthyoses, with Drs. Britt Craiglow, John Dyer, Moise Levy, and Erin Mathes, Epidermolytic Ichthyosis, with Drs. Keith Choate and Anne Lucky; Netherton & Related Skin Types with Drs. Susan Bayliss and Amy Paller; X-Linked Ichthyosis/Vulgaris with Drs. Philip Fleckman, Jennifer Hand and Robert Silverman. Drs. Leonard Milstone and William Rizzo led the session for Syndromes & Ultra-Rare Ichthyoses.

Following the conference kick-off, and throughout the first two days, attendees also enjoyed participating in our first, FIRST VIP media booth, where they were encouraged to share their personal stories, their impressions of the event, and their special takeaways regarding their Indy experience. Members from all backgrounds and all stages of life eagerly shared their thoughts.  Anke Fronz was meeting people for the very first time with ichthyosis. Jean and Warren O’Brien have been attending FIRST conferences for over twenty years. Yet, it was evident during their interview, they had the same wide-eyed enthusiasm as if it were attending for the very first time. Teens Jordan Johnson and Kyle Pappas-Adamson formed a quick bond as they both shared the same type of ichthyosis, EI. They chose to sit together for their interview, and shared some insight on their connection.  Some videos were quickly edited onsite and posted via social media, while others will be posted in upcoming weeks.

During lunch on Friday, attendees played a fun and interactive FIRST trivia game, and then viewed an uplifting “parody” video of members dancing and singing to the hit song, “Brave,” by Sara Bariellas!  Some even felt compelled to dance along! Following lunch, attendees had the option to learn how to manage infections, retinoids, and tips to control itch during the Your Skin: Inside & Out session led by Drs. Amy Paller, Leonard Milstone, and Robert Silverman. They were also given the option to attend A Whole New World, where newly diagnosed families openly discuss their fears and being overwhelmed, and were supported by session leaders, Drs. Britt Craiglow and Anne Lucky, as well as other members who have been through the same situation. For those seeking to understand the scientific aspect of their genetic mutation, a comprehensive lesson in genetics, by Drs. Keith Choate and Fernando Escobar was also offered during our Genetics 101 session.

Meanwhile teens and siblings enjoyed a fun and lively open discussion session, moderated by Program Director Moe Wenik and Rick Guidotti (beach ball ice breaker included!).  Teens were able to truly let loose in a friendly, judgment-free setting.

On Friday afternoon attendees had the choice of attending the Pediatric or Adult Panel, where our ichthyosis expert medical panel answered questions one-on-one, with the audience. In addition to the clinical screenings, these sessions offer a unique opportunity for members are able to meet face-to-face with a medical practitioner, specializing in the field of ichthyosis.

The day ended with a Fun-Raising Mocktail Party, led by Development Coordinator Chris Wassel, where attendees learned how fun and easy grassroots fundraising can actually be! The Cossel, Klafter, Kocher and Robinson families, who have all had FIRST fundraising success, shared their stories, and answered questions on the best practices for holding events both offline and online. Moe Wenik also lead a discussion for all current and prospective Regional Support Network (RSN) members, informing them about the program and how to decide what type of volunteerism may be a good fit for them.

After an amazing day of activities and connecting, everyone enjoyed a beautiful evening in downtown Indianapolis.

Day two started early, with a Board of Directors meeting. All board members were excited for the day ahead, and encouraged by what they had seen at the conference thus far. A recap of conference preparation and public relations was discussed, and the group viewed a clip from WISH-TV, that aired on the local Indianapolis CBS affiliate on June 17, featuring FIRST members, the Swisher family.  The coverage included an interview with Kelsey and Chris Swisher, who shared information about their personal situation, as their daughter is affected by ARCI-lamellar ichthyosis, as well as details about the upcoming family conference. (Conference media clips can also be found on our YouTube channel in the coming weeks.) The meeting ended with a “state of ichthyosis research” presentation from Dr. Leonard Milstone.

After breakfast, the Kid’s Camp kicked off once again and conference attendees eagerly dispersed into the What’s Up with Research session, a lecture discussing the latest advancements and programs in the area of ichthyosis research. New and exciting initiatives were discussed as well as updates to current research projects including an introduction and review of the FIRST research program by Dr. Leonard Milstone, an update in the Disorders of Keratinization Gene Discovery Project by Dr. Keith Choate, and a Prospective of Evaluation of Infants with Congenital Ichthyosis by Dr. Britt Craiglow.  The STAIR Consortium, an exciting multi-center, collaborative research initiative was introduced by Dr. Bill Rizzo, and Dr. Phil Fleckman reported the important information gathered, with regard to quality of life, from the enrollees of the Ichthyosis Registry.

The research session was followed by back-to-back breakouts for learning best techniques for scalp, hair and foot care at the Head to Toe breakout session with Dr. Leslie Castelo-Soccio, or finding the best practices for handling the heat at It’s Getting Hot in Here, whereby Drs. Moise Levy and Bill Rizzo shared a variety of management techniques for sweating and overheating. At the Stop, Look and Listen breakout, member Shannon Hamill, an audiologist from Boston Children’s Hospital, and mother to Lauren Hamill, who is affected with harlequin ichthyosis, and Dr. David Bryson discussed best practices for caring for eyes and ears, including frequency of check-ups, signs of obstruction, and best practices for hygiene (This article discusses results from a recent hearing survey given to FIRST members, co-authored by Shannon Hamill.) Meanwhile teens were invited to a session where they were free to discuss topics of a sensitive nature like, relationships, dating, and more, moderated by Dr. Bethanee Schlosser.

Lunch on Saturday was particularly riveting, as not only were the Volunteer of the Year Awards, Frances Bernsteil Awards, and Distinguished Services Awards given out to our amazing team of volunteers and fundraisers, but we also had the privilege of skyping in Brian Gass, a member affected with ARCI-CIE, currently hiking the Pacific Coast Trail, and spreading his message “do what you love and your skin will follow.”

The teens had a blast that afternoon during a field trip to the mall, as other attendees had the options of learning about Everything But the Kitchen Sink, including skin care products & techniques with Lisa Kass and Sam Zavitz, attending an informative discussion led by members Jolie & Sean Cina regarding the bathing process, additives, and bath time habits, or gain an inside look at how stay balanced and well at Stressed Out breakout session with Dr. Vindhya Veerula. Adult women with ichthyosis also had the option of exploring the unique, often taboo considerations for women with ichthyosis, with Dr. Bethanee Schlosser.

The day ended with attendees gathering in groups that best suited them, for supportive and honest discussion about life with ichthyosis. The groups included the Mom’s Group led by Sarah Hodgkinson, Kelly Klafter, Denise Benedetto and Sarah Kimmelman; the Dad’s Group led by Mark Stenitz; the Young Adults Group (YAWI) led by Dhiren Patel; the Women’s Group led by Jackie Barrett and Beth Hampshire, and the Men’s Group led by Tim Ohlwiler.   There were even a special groups for extended family, and those not directly affected, like the Grandparent’s Group led by Mary and Dave Cina, and the Spouse’s Group led by Tom Clemmer.   Many reported enjoying a real and intimate connection with others that made them feel comfortable and understood. A big thank you to our long-time members who stepped up and offered their wisdom and support.

The Saturday Night Dance Party left few in their chairs, and many inspired by the sheer talent amongst our young members. Ema Hodgkinson performed a beautiful dance routine followed by some astonishing vocalists including, Abby Mast, Kaylee Brown, Taylor White, Jackson White, Treasure White, and Portia Cina who also played the piano.  A special duet was performed by Hunter Steinitz and Lydia Wilson. And of course who could forget the wonderful musical theatre pieces, choreographed by Bailey Pretak and performed by the kids and teens. Encore! Encore!

A robust raffle, raising over $3,600 , was called during the evening, thanks to volunteer and member Chrissy See, as her dedication and hard work in soliciting such beautiful and valuable prizes added a little extra magic to a truly special evening. Dr. Bob Silverman added his own magic, as he was so inspired by Brian Gass earlier in the day, that he publicly pledged to match every dollar of $1,300.00, if collectively this amount was also raised throughout the evening. His goal was to help Brian continue his journey (additionally, Brian’s proceeds from his endeavor are being split with FIRST). Within minutes the $1,300.00 was raised! 

Sunday, the final day of the conference, began with two back-to-back Teen Panels, where teens with ichthyosis and their siblings candidly answered questions from parents, other teens, and other affected adults, sharing an inside perspective on life with ichthyosis. Meanwhile, Dr. Eric Scott discussed how to turn negative feelings into a positive, at the How Rude breakout session and Suzanne Dunkin gave tips on how to prepare for the school year, from IEPs, to bullying, to special classroom accommodations workshop.  Could it Happen to Me, a breakout on bullying behavior, complete with live testimonials from those who had directly experienced bullying, and ways to stand up to it was also offered. (Ironically, Flora Jones, the breakout moderator, showed a television clip of Hunter Steinitz, not knowing Hunter was in attendance at the conference! Eventually they were introduced…) Long-time member, Ellen Clemmer also led a discussion regarding lifestyle and skin changes, and how to best care for yourself at the Aging with Ichthyosis session.

The final sessions of the conference included an inside look at how to prepare for  doctors visits, led by Dr. Phil Fleckman. (During the conference Dr. Keith Choate, along with Dr. Fleckman were interviewed about this very topic, both feeling strongly about the need to prepare before you sit down with a specialist, in order to get the absolute most out of your visit. Their clip will be available in our FAQ video series, in upcoming weeks.)  A lively panel discussion of bloggers, tweeters and Facebook friends also took the stage for a Power of Social Media Q & A, led by members Kimberly Cole, Courtney Westlake, and Jennifer See. All panelists shared their personal stories of how their social media presence evolved, and the various ways it has supported their efforts to raise awareness, as well as the emotional support they feel from their followers.  Chris Wassel also met with anyone interested in holding a future fundraiser, and Dr. Meena Julapalli, Linda Balog and Hunter Steinitz spoke to families about the summer and fall camps available for children with skin disorders, and the many benefits of attending.

Phew…lunch on Sunday was filled with lots of hugs, tears, number exchanges, and more. A particular highlight was the slideshow of conference highlights.  It was an uplifting presentation of the special “moments of the conference that melt your heart,” and the absolute perfect ending to a spectacular three-day event.

In upcoming weeks we will share a more in-depth summary, including points of discussion, Powerpoint presentations, video interviews and articles regarding the sessions that took place during the conference, and the information that was shared. You can also search #FIRSTNFC on Twitter and see all the amazing photos and comments that have been posted by FIRST staff and conference attendees.  We hope you’ve enjoyed the 18^th Biennial FIRST National Family Conference recap. And hopefully we will meet even more families when we reunite in 2016!

To view the complete listing of sessions in the Conference Program, click here.

Thank you to our conference sponsors!