The Snow Foundation will host their First Annual Wolfram Syndrome Community Conference, providing patients and their families, clinicians and researchers the rare opportunity to come together to learn about the latest advances in Wolfram syndrome research and treatment.  The conference will allow participants to connect with one another and take action to achieve a shared vision for a better future for those affected by Wolfram syndrome. 

The conference will be held at Washington University School of Medicine, July 13, 2019.

Please RSVP to Samantha Ranck, rancks@npg.wustl.edu, space is limited.

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Farrell Learning and Teaching Center

Washington University School of Medicine
St. Louis, MO
 

8:30 a.m. – 9:00 a.m. Registration

Connor Auditorium

9:00 a.m. – 9:30 a.m. Welcome and Introductions

Stephanie Snow Gebel
The Snow Foundation

9:30 a.m. – 11:30 a.m. Advances in Wolfram Syndrome Research

• Timothy Barrett, MD (Valproate clinical trial in Europe)
• Fumi Urano, MD (Dantrolene safety trial, genetic testing for WS and related disorders)
• Anton Terasmaa, PhD (Liraglutide treatment studies)
• Tamara Hershey, PhD (Neurodevelopment and neurodegeneration in WS)

11:45 a.m. – 12:00 p.m. Group Photo

Noon – 1:30 p.m. Lunch

King Center

1:45 p.m. – 2:30 p.m. Parent Panel (facilitated by Timothy Barrett, MD)

• Pat Gibilisco
• Rob Birkinshaw
• Lonnie Birkinshaw
• Tracy Lynch

2:30 p.m. – 3:15 p.m. Patient Panel (facilitated by Bess Marshall, MD)

• Nick Pagan
• Raquel Gebel
• Lauren Gibilisco
• Ellie White

3:15 p.m. – 4:00 p.m. Wolfram Syndrome Research Q&A  (facilitated by Sarah Gladston, MD)

• Timothy Barrett, MD
• Tamara Hershey, PhD
• Bess Marshall, MD
• Anton Terasmaa, PhD
• Fumi Urano, MD

4:00 p.m. Closing Remarks

Stephanie Snow Gebel
The Snow Foundation

Childcare – Farrell Learning & Teaching Center has been reserved for childcare

8:30 a.m. – 11:30 a.m. (FLTC)

1:30 p.m. – 3:30 p.m. (FLTC)

 

Please RSVP to Samantha Ranck, rancks@npg.wustl.edu, space is limited.