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Help Us Save
Children & Adults
Fighting
Niemann-Pick Type C

NPC IS DEVASTATING

The disease is always fatal, first striking from infancy to adulthood with progressive
memory loss, seizures, choking, and loss of speech and movement. 

There is no cure or FDA approved therapy, and access to limited experimental therapies are restrictive.


We are working to change this. 

We give a voice to patients around the world advocating universal access for life sustaining medicines for this generation of children and adults fighting NPC.
 

And read a collection of their stories.

Meet some of the people living with Niemann-Pick Type C

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A BRIEF LOOK AT AN NPC DIAGNOSIS

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Children and adults are in the fight of their lives against fatal Niemann-Pick Type C. Without treatment and a cure they will lose their ability to move, speak, eat, breathe and live.

This disease strikes all ages, most frequently children. It's the short term memory loss of Alzheimer's, the tremors of Parkinson's and the systemic decline of ALS. Two experimental medications that patients rely on to slow the disease are at risk of being taken away.

They need your help to stay alive.

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Ways You Can Help

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DONATE

Your donation will support patient access to medication and information as well as treatment research and development.

CURRENT INITIATIVES

Educating yourself on our current initiatives will help keep you up-to-date on the ever-changing landscape of treatment.

OUR STORIES

Reading stories of the people and their families who are affected by NPC will help you to understand what they are facing.

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Learn About NPC

There's much to know about this fatal genetic disorder that affects approximately 1:100,000 births. Please read a brief synopsis of the disease, and meet some of the people fighting for their lives.​

Hope for Marian

Sara and Paul McGlocklin started Hope for Marian after their second daughter, Marian, was diagnosed with Niemann-Pick Type C in 2017. Read about their journey through Sara's blog, and the foundation's mission.

MEET MARIAN

SARA'S BLOG

Subscribe to Our Newsletter

Join now to follow our progress as Hope For Marian advocates for patients with Niemann-Pick Type C.

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