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Our First Year Post Diagnosis

At diagnosis in 2017, I began recording my experience supporting Marian through her first year post diagnosis and utilizing expanded access of adrabetadex, originally titled, "A Mom's Journey to Fight For Her Daughter's Life...And Some Every Day Stuff Too."

I hope these entries can help NPC families feel supported, find hope and for others to connect with the experience of receiving this diagnosis and advocating for children and adults with NPC.

Turning Two

Sara McGlocklin

Aug 25, 20173 min read

Turning Two

When Marian turned one I did not know if she would live to be two. That sounds like an exaggeration, it’s not. I only shared this thought...

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To 400 And Back Again

Sara McGlocklin

Jul 29, 20174 min read

To 400 And Back Again

Marian is the youngest patient in the world that we know of to be receiving this treatment via IT (spinal fluid). Another title holder is...

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Science and Hope in Arizona

Sara McGlocklin

Jun 7, 20177 min read

Science and Hope in Arizona

Well, it happened. I cried in public. The worst. I last cried in public seven years ago and still cringe when I think of it. Albeit that...

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The Ups and Downs: A List

Sara McGlocklin

Apr 16, 20174 min read

The Ups and Downs: A List

Here are some things we've learned this week: 1. Contrary to what I always believed, it is possible for a stomach bug to last for seven...

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