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Our families journey with a life threatening neuro-muscular disease, from searching for a diagnosis to end of life challenges to the grief roller-coaster. PCH1A, a altercation of the VRK1 gene

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Posted by Marci Scher May 19, 2016

Pain Stinks

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Posted by Marci Scher May 10, 2016

B'Nai Mitzvah - May 8, 2016

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Posted by Marci Scher April 17, 2016

Grateful for Insurance

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Posted by Marci Scher April 04, 2016

Welcome to Holland (Part 2) by Anonymous

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Posted by Marci Scher April 04, 2016

Welcome to Holland by Emily Perl Kingsley

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Posted by Marci Scher April 04, 2016

Caregiver Stress

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Posted by Marci Scher March 27, 2016

A Full Weekend of Chai Lifeline

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Posted by Marci Scher March 24, 2016

Roller Coaster Week

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Posted by Marci Scher March 06, 2016

Out and About With Friends

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Posted by Marci Scher February 29, 2016

World RARE Disease Day 2016

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Posted by Marci Scher February 18, 2016

Words in Your Heart that You Can't Utter

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