2016 National Conference Information

To register for the conference online, click here. To download/print a pdf of this information, click here.

What’s The Conference All About?

In the words of FIRST member, Denise Eiser...

I have attended four FIRST National conferences, with my parents in the ‘90s and now my own family. Each time I learn something new, make new friends, and leave the conference bursting with hope for the future of our rare disease. If you or a family member is affected with ichthyosis or a related skin type, this is an absolute “don’t miss” event. Here’s why…

Meet the Medical Experts - The National Conference offers the rare opportunity to learn from ichthyosis & related skin type experts. Experts. There are only a few in the country, and you can meet them, one-on-one! Free, fifteen minute clinical appointments are even available!

Program
(subject to change)

Thursday, June 23

7 - 8 pm…………....…….. Early Bird Registration
7 - 10 pm…………………....……..Evening Social

Friday, June 24

8 - 9:30 am….....……...Breakfast & Registration
 9:45 - 12 pm…....Types of Ichthyosis Breakouts
12 - 1 pm..……..…….……………………..Lunch
1:15 - 4:30 pm……....………………...Breakouts
1:15 - 4:30 pm….......Teen Session & Pool Party
6 pm….…...….….Pizza & Trolley Tour (optional)

Saturday, June 25

 7:30 - 8 am…….....Light Yoga Stretch (optional)
8 - 9:30 am…….….……………………Breakfast
9:45 - 10:45 am…....Life with a visible difference
11 - 12:15 pm……..…….Teens & Siblings Panel
12:15 - 1:15 pm…....……………………….Lunch
1:30 - 2:45 pm….…. Research Panel and Q & A
2:45 - 3:15 pm…….………..Let’s RAISE the Bar
3:30 - 5:00 pm….….….Private support sessions
6:30 - 10 pm…......Beach party, awards, dancing

 Sunday, June 26

8 - 9:30 am……....…..…….……….……Breakfast
9:45 - 11:45 am….….….………….…...Breakouts
9:45—11:45 am……...….………....Teen Session
12:00 - 12:30 pm….......…..Conference Wrap-Up
12:30 - 2 pm………..….………....Farewell Lunch

Kid-a-Palooza

A supervised kid’s camp for ages one to completed fifth grade will be offered concurrently with all educational sessions for little ones to play, laugh, and have fun while parents attend lectures and breakouts. Your child(ren) will rejoin you for all meal functions. A licensed childcare company will be hired. A nominal fee is required so FIRST can confirm how many are planning to use this service and the appropriate number of childcare providers are hired for your child’s safety.

Tweens & Teens

Interactive and educational breakouts. Plenty of opportunities to attend general sessions, hangout time, enjoy the  pool together, plus more!

Surround Yourself with Affected Families & Individuals - For once, ichthyosis is the majority. You’ll see people with your type of ichthyosis in the elevator and in the halls. You’ll see people putting lotion on everywhere. Kids holding hand with others and feeling comfortable. Through casual encounters, formal presentations, and in-depth conversations, you will feel it and see it: you are not alone. This, by itself, is a life-changing experience.

Make Friends that Last a Lifetime - Many parents feel overwhelmed with everything that comes along with an ichthyosis diagnosis, and the “ichthyosis family” is a support network that runs far and wide. At the conference you will no doubt spark connections for a lifetime.

Get ideas - Did you know that some people use a Dremel drill for their feet? That sleeping with surgical gloves can help your cream work? That UV rays are good for some types of ichthyosis but not for others? Some of the most effective treatments I’ve found have been from suggestions at the conference.

Stay In-the-Know – You’ll hear all the latest in research, from the scientists themselves! You’ll learn what’s new with FIRST, and how to get involved. Plus, you’ll find answers to issues like making special accommodations at school, how to spot an infection, or finding the best way to explain ichthyosis to a classroom or employer.

See Your Future –New parents with affected toddlers can meet happy and adjusted teens with ichthyosis. Young adults can talk with 30-somethings and adults can visit with seniors and find out what issues and solutions they’ve found for aging with ichthyosis.

Inspire Others -  Your strength with other new parents, other affected people, and even the dermatologists can be empowering to you. I’ll never forget how strong I felt when I was able to lift up a room full of parents just by sharing my own story.

Read more ...

Hotel room reservations must be made on your own and are separate from your conference registration.  See below to book your stay with FIRST’s discounted room rate.

Making Hotel Room Reservations

FIRST’s discounted group rate at the Marriott Mission Valley is $189* ++ per night. The discounted guestroom internet fee is $6 per day. Self parking is $12 per day. All attendees must make their own hotel reservations in one of two ways:

1. Online Reservations - A dedicated booking website has been created just for our conference to make, modify and cancel their hotel reservations online using this link:     https://resweb.passkey.com/go/FIRSTOverflow2016

2. Phone - Please use the following numbers to make your reservation by phone. When making your reservation, be sure to reference the “Foundation for Ichthyosis” to book within our group room block and receive the discounted rate.
Reservations toll free: 1.877.622.3056 or reservations local phone: 1.619.692.3800.

*The hotel is still honoring the shoulder dates of June 19 through June 22 and June 26 through June 29 at the $129++ room rate until those room blocks fill. When making your reservations including any of those dates, the discounted rate of $129 will be modified by the group sales manager internally and will be reflected on your final bill. The dates of Thursday, June 23 – Saturday, June 25 will be billed at $189++.

Room Reservation Update!
If you are unable to book a discounted room from our reserved block please call the Marriott Mission Valley for full rate rooms that may still be available.  If there are no rooms left at the Marriott Mission Valley at the time you make your reservation, you will find alternate accommodations at these nearby locations:

Springhill Suites Mission Valley (brand new and closest to the Marriott)
Doubletree by Hilton Mission Valley
Sheraton Mission Valley
Hilton San Diego Mission Valley

For general questions about the hotel, driving directions, amenities, etc., contact the hotel directly at 619.692.380 or visit their website at http://www.marriott.com/hotels/travel/san-diego-marriott-mission-valley/.com.

Airport & Shuttle Information

San Diego International Airport (SAN) is the major airport for the San Diego area and is about eight miles from the hotel. 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.

There are several travel options between the airport and hotel:

Supershuttle: 1(800)BLU-EVAN—supershuttle.com
$12.00 per person to/from airport

Yellow Cab: (619)444-4444—sandiego.driveu.com/taxi.php
$25—$30 per cab one way (fits up to 4 persons)

Town Car/Limo Service: SanLimo Transportation
(858)752-7291—sanlimo.com—san.limo@yahoo.com
Contact: Harry Sharifi—$28 flat rate one way (up to 4 persons)

Uber: Available to pick up and drop off to/from the airport for around $19—$25. Contact the hotel for discount codes up to $20 off for those who have never used Uber before.

Friday Pizza & Trolley Tour
(Optional)

This optional activity features a casual pizza get-together at the hotel before embarking on a two-hour trolley tour of beautiful San Diego. Sights include Old Town, San Diego Harbor and Embarcadero, Seaport Village, Horton Plaza, Historic Gaslamp Quarter, Coronado, Balboa Park and Little Italy.  All trollies will stop midway through the tour at Coronado Beach for a bathroom break and leg stretch. Sign-up on the registration form to reserve your spot(s).

Please note: The trolleys are not air-conditioned but have open windows and water on board.

 

Dress Code, Meals, Attractions

The conference attire is casual.  Your registration fee includes Friday breakfast & lunch, Saturday breakfast, lunch & dinner, and Sunday breakfast & lunch.   The San Diego Marriott Mission Valley provides easy access to popular attractions including Old Town, Mission Bay, the Rio Vista Trolley, SeaWorld® San Diego, Qualcomm Stadium, home of the San Diego Chargers, and Petco Park, home of the San Diego Padres.  For more information on area attractions, go to www.sandiego.org/plan-your-trip/travel-guides or access special offers and coupons by visiting www.sandiego.org/coupons.

FIRST's Got Talent  (Optional)

Back for its fifth conference! This is a popular and heartwarming experience for kids, ages 5—17, to showcase their talents. Performances are on Saturday evening after dinner. Speakers and microphone will be provided; bring your own music, costume, props, etc. Performances will be limited to a max of two minutes. Sign-up on the registration form.

Participate in Research

1.  On Saturday, June 25, investigators from Yale University will be enrolling patients int he Yale Registry, the only US-based program focused on better understanding disorders of keratinization from a genetic and clinical perspective.  This group continues to make remarkable progress, largely thanks to the participation of FIRST members.  For new enrollees, the study will involve providing a saliva sample, photographs, and completing a questionnaire.  For those already enrolled, there will be an opportunity to update information.  Sign ups will be included on the registration form.

2.  At the last FIRST conference in Indianapolis, Dr. Amy Paller, one of our Emeritus Board Members, enrolled several participants in a study.  She has now evaluated skin samples from more than 30 individuals with ichthyosis with exciting results.  Dr. Paller has submitted the information for publication, and is planning a clinical trial for affected adults based on her discoveries, which have led to a possible new way to take away the redness and possibly the scaling of ichthyosis with a monthly injection.  At the FIRST National Conference in San Diego, Dr. Paller and her team wll be enrolling more children (≥8 years old) and adults with ichthyosis (excluding ichthyosis vulgaris and x-linked recessive in the study.  This research will involve clinicial examination, measurements of water loss through the skin, photos, a blood sample, tape strips and a small skin biopsy.  You can also choose to participate in a mini-study involving only clinical examination, water loss measurement and tape strips. 

We have an additional opportunity for participation.  Itch is a frequent symptom of ichthyoses, and can have an effect on sleep, mood and activities.  To better capture the effects of itch on quality of life, we are developing an itch questionnaire that will be applicable to a wide variety of skin problems, including ichthyosis. To do this, we are seeking children with ichthyosis (ages 8-17) who have itch, together with a parent, to each complete a survey to help us develop these questions about itch.  It's very quick, but we are hoping that many will volunteer on Friday at the meeting to fill this out for us. These studies will only be on Friday, June 24.  If you are interested in participating in this one-day study, please contact Thy Huynh at thy.huynh@northwestern.edu; she will be pre-registering interested individuals.

Meet Chad Porter, Keynote Speaker of the 2016 National Conference

To register for the conference online, click here. To download/print a pdf of this information, click here.

 



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