National Conference Program-at-a-glance

A quick glance at what is planned for the weekend so that you can make your travel plans accordingly.

Thursday evening, June 23, 2022

6:30 pm - 8:30 pm
FIRST Welcome Reception

Friday, June 24, 2022

7:30 am - 9:00 am
FIRST Breakfast
7:30 am - 9:00 am
Registration
7:30 am - 8:30  am
First Timers Welcome and Orientation for Parents, Children and Adults
8:00 am - 5:00 pm
8:30 am - 9:00 am
Kids Camp Drop-off
(pre-registered children ages 1 - 12)
 
 
9:00 am - 10:30 am
Conference Opening
Welcome to the 2022 FIRST National Conference
- FIRST Board Co-Chairs Tracie Pretak and Mark Evans
What to Expect from the National Conference
- FIRST CEO Chris Boynton
Keynote Speaker - Shawn Harper
10:30 am - 10:45 am
Coffee Break
11:00 am - 12:00 noon
Standing Up for Yourself - A Crash Course in Legal Rights and Self-Advocacy for Daily Life
12:00 noon - 1:00 pm
FIRST Lunch and Distinguished Service Awards
  
Families with Children
Young Adults
Affected Adults
1:00 pm  - 5:00 pm
Kids Camp
 
 

 

1:00 pm - 1:45 pm
Welcome Parents
(Welcome to Holland)
Welcome Young Adults
Welcome Affected Adults

 

 2:00 pm - 2:45 pm
How to talk to your child about their ichthyosis
Transitions: leaving the nest, heading to college and entering the workforce
Nutrition

 

3:00 pm - 3:45 pm
Join the Fun, Volunteer w/ FIRST
Cosmetics & Hair Care / Staying Fit
Well Being - Exercise, Mental Health & Relaxation Tools

 

4:00 - 4:45 pm
Bullying
Risk Taking & Comfort Zones
Navigating Relationships

 

6:00 pm - 8:30 pm
Pre-Registered Outing (Providence Bus Tour)

Saturday, June 25, 2022

7:30 am - 9:00 am
FIRST Breakfast
8:30 am - 9:00 am
Kids Camp Drop-off
(pre-registered children ages 1 - 12)
 
 
9:00 am - 9:15 am
Morning Briefing and Preparing for Day 2
9:15 am - 9:45 am
Member Keynote Speaker - Hunter Steinitz
 
Care & Treatment Workshops (each session offered twice)
10:00 am - 10:45 am
             and
11:00 am - 11:45 am
Bathing and Skin
Eye and Ear Car
Retinoids
Overheating and Itch
Wound and Infection Care
Joint Issues
Sleep Issues
Genetics 101
11:00 am - 12:00 noon
FIRST Lunch and Lunch Activity

 

 
Types of Ichthyosis Sessions
1:00 pm - 2:00 pm

 
Ichthyosis En Confetti
Epidermolytic Ichthyosis & PPK
KID, CHILD, PRP, TTD & Related Skin Types
ARCI-Harlequin Type
ARCI- Lamellar & CIE Type
Sjogren-Larsson Syndrome (SLS)
Vulgaris & X-linked ichthyosis
Netherton Syndrome
Education: Parents Rights Under the Law
2:00 pm - 2:30 pm
Break
  
Families with Children
Young Adults
Affected Adults
2:30 pm - 4:30 pm
Moms Group 1
Moms Group2
Dads Group
Grandparents Group
Pre-Teen Group
Teens Group
Young Adult
Education: Parent's Rights under the law
Womens Group
Mens  Group
Spouses Group
4:45 pm - 5:30 pm
Ichthyosis and FIRST: The common threads in my life of investigation, Dr. Leonard Milstone
6:30 pm - 10:00 pm:
Saturday Evening Celebration Dinner
6:30 pm - 7:30 pm:
Dinner and Performances
7:30 pm - 8:00 pm
Group Activitiy - Audience Participation Event
8:00 pm - 10:00 pm
FIRST Karaoke Sing Off Contest
 
Adult Mixology Class and Social Hour

Sunday, June 26, 2022

7:30 am - 9:00 am
FIRST Breakfast
8:30 am - 9:00 am
Kids Camp Drop-off
(pre-registered children ages 1 - 12)
 
 
9:00 am - 9:45 am
Ichthyosis Research Update
9:50 am - 10: 45 am
Participating in Clinical Trials - What to Expect - Panel of Pharma Partners
10:45 am - 11:00 am
Break and Check-out
11:00 am - 11:15 am
Closing Remarks
11:15 am - 12:00 noon
Closing Keynote Speaker - Andrew Buerger
12:00 noon
Farewell Lunch
(box lunches to take on the road)

 


Conference date & location:

Friday, June 24, 2022 7:00 am - Sunday, June 26, 2022 2:00 pm                  #FIRSTNC22
Crowne Plaza Providence-Warwick Airport
801 Greenwich Drive
Warwick, RI 02886
1-401-732-6000

 

Registration Rates and Dates

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