Providence Program At A Glance
National Conference Program-at-a-glance
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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
Clinical Appointments & Research Studies (by appointment)
8:30 am - 9:00 am
Kids Camp Drop-off
(pre-registered children ages 1 - 12)
(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
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 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)
(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
and
11:00 am - 11:45 am
Bathing and Skin
Eye and Ear Car
Retinoids
Eye and Ear Car
Retinoids
Overheating and Itch
Wound and Infection Care
Joint Issues
Wound and Infection Care
Joint Issues
Sleep Issues
Genetics 101
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
Epidermolytic Ichthyosis & PPK
KID, CHILD, PRP, TTD & Related Skin Types
ARCI-Harlequin Type
ARCI- Lamellar & CIE Type
Sjogren-Larsson Syndrome (SLS)
ARCI- Lamellar & CIE Type
Sjogren-Larsson Syndrome (SLS)
Vulgaris & X-linked ichthyosis
Netherton Syndrome
Education: Parents Rights Under the Law
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
Moms Group2
Dads Group
Grandparents Group
Pre-Teen Group
Teens Group
Young Adult
Education: Parent's Rights under the law
Teens Group
Young Adult
Education: Parent's Rights under the law
Womens Group
Mens Group
Spouses 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)
(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)
(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
Crowne Plaza Providence-Warwick Airport
801 Greenwich Drive
Warwick, RI 02886
1-401-732-6000
