In this episode of the Brain & Life podcast, co-host Dr. Katy Peters is joined by Jessica Patay, mother, caregiver, and founder of the nonprofit We Are Brave Together. Jessica discusser her son's diagnosis with a rare genetic neurologic condition called Prader-Willi Syndrome and how it led her to found an organization whose mission is to preserve and protect the mental health of caregiving moms of disabled and neurodiverse children. Dr. Peters is then joined by Dr. Emily De Los Reyes, attending pediatric neurologist at Nationwide Children's and Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. They discuss exactly what Prader-Willi syndrome is, how it's diagnosed and treated, and what the future looks like for patients and their families.

 

Additional Resources

We Are Brave Together

How Parents Advocate for Their Children with Rare Diseases

These Parents are Giving Their Teenager a Life of Adventure Despite Rett Syndrome

Sibling Caregivers Share Rewards and Challenges

 

Other Brain & Life Episodes on this Topic

Resiliency and Caregiving with Janet Fanaki

Journalist Richard Engel on Parenting a Child with Rett Syndrome

Gavin McHugh is Building an Acting Career and a Community with Cerebral Palsy

 

We want to hear from you!

Have a question or want to hear a topic featured on the Brain & Life Podcast?

·       Record a voicemail at 612-928-6206

·       Email us at [email protected]

 

Social Media:  

Guests: Jessica Patay @wearebravetogether; Dr. De Los Reyes @nationwidekids

Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD