Friday, July 13, 2018

11:00 am

  1. Parents and Siblings of Adults With Galactosemia Roundtable
  2. On the Fence of Independent Living
  3. Are Neurons Different for People with Galactosemia?
  4. The 3 R’s of Transition to Adulthood: Responsibility, Regulation, Relationships
  5. The Evolution of the Galactosemia Diet
  6. What Is Metabolomics And How Can It Help Us Understand Classic Galactosemia?
  7. International Guidelines for Galactosemia

 

1:30 pm

  1. Pre-School Roundtable
  2. First Descriptive Analysis Of Galactosemia International Registry Data
  3. What To Expect In 1st 9 Yrs
  4. Targeting Cellular Stress As A Novel Therapeutic Approach For CG
  5. The Evolution Of The Galactosemia Diet
  6. What Have We Learned About Ovarian Function In Girls And Young Women With Classic Galactosemia?
  7. The 3 R’s of Transition to Adulthood: Responsibility, Regulation, Relationships

 

2:45 pm

  1. Elementary School Roundtable
  2. Adults Living With Galactosemia: Challenges Navigating The “Real World”
  3. What Does A Cure Looks Like?
  4. Education of Children with Galactosemia: As Seen Through an Educator and a Parent
  5. Cooking Demo
  6. Finance - Protecting Your Families Future

 

Saturday, July 14, 2018

1:00 pm

  1. Grandparents / Extended Family Roundtable
  2. Galactosemia Zebrafish Model
  3. Frustrated With Phonics
  4. Small Molecule Drug Discovery 
  5. Update On Nutrition Research For Galactosemia

 

2:15 pm

  1. Middle School Roundtable
  2. Galactosemia In Español
  3. Gal-1-P Is It Necessary?
  4. Experimental Nucleic Acid-Based Therapy For Classic Galactosemia
  5. Nutrition Research Needs/Update
  6. Childhood Apraxia Of Speech
  7. Future of the Galactosemia Foundation

3:30 pm

  1. Highschool & College Roundtable
  2. Q&A Roundtable
  3. Education of Children with Galactosemia: As Seen Through an Educator and a Parent
  4. Fundraising 101
  5. How to start a regional group
  6. Managing pharmacy issues for the patient with galactosemia