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2018 Annual Meeting
November 10, 2018
Join us on Saturday, November 10th, for our the annual PKU Organization of Illinois Conference, where we will have keynote speaker Dr. Durrer-Deming, as she presents her latest study on a probiotic which would essentially lower serum PHE levels.
There will be breakout groups that focus on the various age groups, and workshops to teach children how to track and measure PHE.
Our overall theme will focus on PKU through adulthood and getting children set up for success.
SCHEDULE OF EVENTS
8:15 – Registration/Breakfast
Concourse A
8:50 – Children’s program starts
Room: Love A (Downstairs)
9:00 – Meeting starts
Board introductions
Event Recap
NPKUA update
Room: O’Hare 1
10:00 –11:00 – Keynote speaker
Dr. Katherine Durrer
11:00 – 11:15 – Mid morning break
11:15 – 12:00 – Palynziq lecture –
Heather Bausell Luries RD, Erika Vucko, Lurie’s APN
12:00-12:30 – Vendor Break
Room: Concourse A
12:30- 1:30 – Lunch
Room: O’Hare 2
1:30 – 2:30pm – Breakouts
- Infancy- “Introduction to Solids”
Amanda, Katie (Lurie RDs)
Room: Dulles
- Elementary/Jr High
Grant, Pam, Krista (UIC RD)
Room: La Guardia
- High School/College
Andrea (Genetics Counselor), Shannon (UIC RD), Sean
Room: Haneda
- Adulthood/Family Planning
Elena, Soo, Mitzie Grant (Neuropsychologist), Heather (Lurie RD)
Room: O’Hare 1
2:30 – 2:45pm – Afternoon Break
Room: Concourse A
2:45pm – 3:00pm– Kid’s return
Room: O’Hare 1
3:00 – 3:30 Measuring Demo
Room: O’Hare 1
3:30 – Raffle, Scholarship winners
Room: O’Hare 1
4:00 – End conference
Children’s Program
Lead by Brittany Smith (Lurie’s Child Life Specialist)
Volunteers: Carolyn Ries, Roxanne Del Rosario
9:00 – Ice breakers
9:30 – 10:30am – PKU and You
Exchange ideas/tools for school/friends
How do you help take care of yourself?
Blood PHE
10:30-11- Goal making discussion
What are milestones?
What would you like to accomplish?
11-11:30 – (develop stones)
11:30-12 – Genetic Make-Up
12-12:30 – Time for games.
12:30-1:30 Lunch
1:30-2 Vendors
2-2:30 Cookies with Margaret
2:30-2:45 – practice presentation
2:45-3 Presentation