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Core Concepts
The Beginning
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Understanding Interventions
Coping, Family and Relationships
End of Life and Bereavement
Explore
Not sure where to start?
Explore CPN Core Concepts
Learn More
Video Library
Audio Library
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Featured Family
Units
Diagnoses
Events
About
Not sure where to start?
Explore CPN Core Concepts
Learn More
Our Origin
Donors
Annual Report
Parent Champions
Speaking Engagements
Staff and Board
Mobile App
Contribute a Blog
Collaborations and Co-Authorship in Research
Medical Advisory Board
The Ilene Beal and Margaret S Lindsay Courageous Provider Awards (2024 Announcement)
Talk to CPN
En Español
Clinicians/Educators
NeuroJourney
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JENN JOE
Jenn & Joe
Parents of Mallory, who has Juvenile Tay-Sachs and siblings Matthew and Melanie. At the time of this interview, Mallory was 6. She is now 9 years old.
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I don’t know what I’m going to do when I don’t have to worry.
Helping Siblings Cope, From the Parents
There’s a fine line between hope and acceptance.
Focus on the Here and Now
Her pediatrician is out of this world!
We have a wonderful staff of nurses.
He always backs me up.
We never held anything back from them.
We’re still trying to figure out the balance piece.
Our goal is to get them as OK with this as possible, before.
You have to take a break from it.
We decided to let her do it on her own and she’s been here ever since.
How do you pick up and move on?
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Joe and Jenn
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