2014 Family Conference Information

18th Biennial National Family Conference  ~  June 20 - 22, 2014
~  Indianapolis, Indiana  #FIRSTNFC

Why should I/we attend?


We think the best way to explain why you should attend is to hear first-hand what others have said:

  • "I really enjoyed being able to not worry about the stares.  I also really liked having doctors here who we didn’t have to educate about my condition; they already knew what I had."
  • "I most enjoyed networking with others and realizing how important it is that our population interacts collectively with the researchers so that connections toward research can be made."
  • "Every year this experience changes my views on life and makes me a more positive and comfortable person."
  • "Everyone in my family was involved -- my kids loved the Kid's Camp, my teenage son enjoyed talking and hanging out with his peers, and my wife and I really connected with other parents."
  • "Fantastic! Thank you so much. This conference was truly incredible and inspiring. I learned so much."

What’s on the Agenda?

In addition to the exclusive opportunity to participate in the Yale Ichthyosis Research Project and a one-on-one consultation with a medical expert, here’s what’s on the agenda and featured workshops:

  • Disease-specific workshop focused on your type of ichthyosis or related skin type, moderated by a physician
  • Lotions, creams and ‘what works’ information sharing workshop
  • Newly-diagnosed families workshop
  • Understanding the complicated world of genetics workshop
  • Research updates and how it will impact you
  • Group networking workshops focused specifically for moms, dads, teens, affected men and women, grandparents, young adults, and spouses
  • Specific care workshops – Foot, scalp, hair, diet, nutrition, natural care, exercise, eyes, ears, and pregnancy
  • Skin management workshops – infections, long term use of antibiotics, retinoids, and overheating
  • Communications workshops – confidence building, addressing rude people, dealing with doctors, school and bullying concerns

All workshops feature a question & answer period and are very casual, allowing the opportunity to share and learn from each other.

What Should I Expect?

The conference is an amazing, worthwhile, and moving event for the entire family.  Attendees will arrive at all different times, most arriving on Thursday. It’s typical to see clusters of people gathered in the lobby, hallways, and sitting areas chatting with old and new friends. Registration takes place early Friday morning and is complemented by a group breakfast. Kid’s Camp and educational workshops run throughout the rest of the day on Friday, with a break for lunch. Friday’s workshops will end by 4:30 pm, and attendees are on their own for Friday night activities.

We begin early again on Saturday morning with a group breakfast followed by Kid’s Camp and workshops throughout the day until 5:15 pm, with a break for lunch. Everyone has a chance to freshen-up before the dinner/dance party which begins at 6:30 pm. The dance party features a live DJ who will play the latest hits and party games. Some people think this is the best part of the conference…you’ll be sure to see some smooth dance moves by young Michael Jackson and JLo wannabes! The evening also features a raffle and auction items. 

The last day on Sunday begins with the group breakfast, Kid’s Camp and workshops until 12:15 pm. This is followed by a closing session and farewell lunch. Friends and families exchange addresses, hugs, and best wishes until the next conference! Friendships are made that are life-changing.  The Conference Program is now available via this link.

Registration for the conference can be completed by completing the registration form or registering  online by June 2nd.   Registrations without a completed form and payment will not be considered complete. Cancellations received prior to June 2nd will be refunded less a $25 per person administrativ­e fee.  No refunds issued after June 2nd. Please note: Registration does not include your hotel room.  Accommodation­s at the Hilton Indianapolis must be made separately.

Kid’s Camp
Social programs for all affected children and their siblings are an integral part of the conference.  Children in the Kid’s Camp (ages 1—12) will enjoy activities, entertainment, educational programs and refreshments while their parents participate in conference workshops and sessions. Be sure to indicate if your child will be attending the Kid’s Camp section on the registration form. A licensed child care company will be hired to provide this service. A nominal fee is required so FIRST can confirm who is planning to use this service and the appropriate number of childcare providers will be hired for the safety of your children.

FIRST Continues to Advance Ichthyosis Related Research – Be a Participant!

Yale Ichthyosis Project – Dr. Keith Choate and his team from Yale will once again be enrolling patients in the Yale Ichthyosis Project, which is seeking to better understand disorders of keratinization from a genetic and clinical perspective.  The group has been making excellent progress and is poised to address several important questions about ichthyosis, largely thanks to the participation of members of FIRST.  For interested new families, the study will involve a blood draw, photographs, and completing a questionnaire.  For those who are already involved with the study, there will be an opportunity to update information.  More information will be provided as we get closer to the conference.
Meet with an Expert Physician for a One-on-one Consultation
- Clinical Screening

All affected individuals and their families have the opportunity to meet with leading expert physicians for a free, private 15-minute consultation or a one-hour clinical and research visit that will include medical history, photographs and blood samples.  These appointments will be held on Thursday evening, June 19 (Friday morning, June 20 appointments are filled).  Participation is voluntary.  Sign-up is required prior to the conference by completing the Clinical Screening section of the Registration Form.

PLEASE NOTE:  There are two types of appointments with ichthyosis experts.
These appointments are optional, but very worthwhile. If you are interested, please choose one of the options:

1. Clinical screening with ichthyosis experts (15 minutes) - You will meet with experts in the field of ichthyosis to review your medical and family history and to answer any questions you may have.

2.  Clinical and research visit with ichthyosis experts (1 hour) - This screening will include a clinical visit with experts in the field of ichthyosis to review your medical and family history and to answer any questions you may have.  Plus, you will also complete a questionnaire about your medical and family history prior to the conference, sign an informed consent, have photographs taken of your skin, and a blood sample will be taken for the purpose of genetic testing (if you have not already had a blood test that has revealed your genetic diagnosis).

Making Hotel Room Reservations
FIRST’s discounted rate for an oversized room at the Hilton Indianapolis is $119 ++ per night. This rate is available from June 17 through June 25 and includes complimentary internet access in each room. All attendees must make their own reservations at the Hilton Indianapolis by calling toll-free 1.800.315.1906 (to receive the discounted room rate, you must identify our group name as "Foundation for Ichthyosis") or making online reservations by using our dedicated group link at http://www.hilton.com/en/hi/groups/personalized/I/INDDNHF-FFI-20140617/index.jhtml?WT.mc_id=POG  Reservations must be received on or before midnight on May 18, 2014 to be guaranteed a room in the room block.  All reservations must be accompanied by a first night room deposit guaranteed with a major credit card. Parking is $14 for self-park and $20 for valet parking. Other hotel rules and restrictions may apply.

For general questions about the hotel, driving directions, amenities, etc., contact the hotel directly at 317.972.0600 or visit their website at www.indianapolishilton.com.

Meals, Area Attractions, and Dress Code
The conference registration fee includes breakfast & lunch on Friday, June 20; breakfast, lunch, and dinner/dance on Saturday, June 21; and breakfast and lunch on Sunday, June 22.  All registrants are on their own for dinner on Friday evening, June 20.

Positioned in the heart of downtown Indianapolis, the hotel offers you multiple choices of activities and is just steps away from the Circle Centre Mall, cultural attractions, great restaurants and evening entertainment options. Within a 2-4 block radius of the hotel, you will find the Indiana Convention Center, Lucas Oil Stadium, NCAA Hall of Champions, Bankers Life Fieldhouse, Indianapolis Zoo, and an IMAX 3D Theatre, just to name a few.  To learn more, visit the hotel website at www.indianapolishilton.com or visit the Visitors & Convention Center website for discounts and choices of things to do - http://visitindy.com/fnfc14 .

Conference attire is casual.

Airport & Shuttle Information

Indianapolis International Airport (IND) is the major airport for the Indianapolis area.  Carey Limousine is the local shared ride service to/from the airport to downtown Indianapolis. Proceed to the ground transportation/baggage claim area to locate their services. The discounted cost for conference attendees is $16.95 per person one way. Pre-reservations are encouraged. Please call toll-free: 800-888-INDY or use their website to make your reservation - https://careyindiana.hudsonltd.net/res.

You may be eligible for free transportation using the Air Charity Network.  To find out if you are eligible for free transportation to and from the conference, please contact Air Charity Network directly at 877.621.7177.

Teen Field Trip
Teenagers, ages 13-17, will participate in a chaperoned offsite field trip to the Circle Centre Mall on Saturday afternoon of the conference. The mall features an IMAX Theatre, so depending on showtimes, an age-appropriate movie may be included. Be sure to check the box on the registration form if you want your teen to participate.

Cooling Vest Depot

Has your child outgrown their cooling vest? We’ve got the perfect place to pay it forward!  Bring your gently used cooling vest to the Cooling Vest Depot at the 2014 National Family Conference in Indianapolis!   Your vest may be the perfect fit for someone else. There is also a chance that you’ll even find the perfect fit for your child too!

Or, perhaps you are just in need of a cooling vest, and don’t necessarily have one to donate. Not to worry. Whether or not you donate a vest, you will still have an opportunity to see if there is a vest for you at the depot.

Please note:  that this is not a swap and there are no guarantees that you will find a vest that works for you.  For questions, please contact mwenik@firstskinfoundation.org.

Family Conference Financial Aid Fund

(Funded by the Jean Giroux Charitable Trust)
A fund is available for families to apply for financial assistance to attend the 2014 National Family Conference. The Family Conference Financial Aid Fund, funded by the Jean Giroux Charitable Trust, will provide funds for registration and accommodations. Funding is limited; all applications will be evaluated based on scholarship guidelines.
  • Scholarships are available for registration fees for two people, with one adult or child being affected.
  • The deadline has passed to apply for financial aid for the 2014 conference.

To register for the 2014 National Family Conference online, click here.

To view and/or print out a pdf version of this information, click here.

To view and/or print out the registration form only, click here.


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