Finding Hope in the Rare: Jane’s Story and the Fight for Mowat-Wilson Syndrome Research

About this episode

Lauren and Matt Noonan share their journey following their daughter Jane’s diagnosis with Mowat-Wilson Syndrome and discuss the impact of advocacy and research on families with rare diseases.

In this episode of Sounds of Science , Lauren and Matt Noonan share their powerful journey following their daughter Jane’s diagnosis with Mowat-Wilson Syndrome. From unexpected medical challenges to finding community and launching their own nonprofit, the OURS Foundation, they discuss how advocacy, collaboration, and emerging research are shaping new hope for families living with rare diseases. Charles River | ASO Development Charles River | ASO Screening Services Charles River | Rare Disease Charles River | Rare Disease Research for Drug Development Mowat Wilson Foundation

People in this episode

Host: Charles River

Guests: Lauren Noonan, Matt Noonan

Topics covered

• Mowat-Wilson Syndrome
• rare diseases
• advocacy
• nonprofit
• medical challenges
• community support

Keywords

• Mowat-Wilson Syndrome
• rare diseases
• advocacy
• OURS Foundation
• medical challenges
• community
• nonprofit

Mentioned in this episode

Organizations: OURS Foundation, Mowat Wilson Foundation, Charles River

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