About

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our Story

creating a softer place to Land

Learning about neurofibromatosis while waiting for a diagnosis can be a harrowing experience. Our goal is to provide an honest representation of how NF impacts patients and their supporters, both good and bad, for those who are beginning and evolving through their journey of diagnosis and treatment.

When our pediatrician first noticed my baby's cafe au lait spots at 26 days old, she said, "He may have a genetic condition so you should see a neurologist. Don't Google it."


This advice was impossible to follow, but it did help prepare me for what I would see--a barrage of images and accounts of the most severe NF presentations. It's a common story among NF parents who stumble into a terrifying new reality that intensifies with every scroll and click.


But hidden amid the heart-wrenching photos and devastating stories is the fact that the vast majority of NF patients lead happy, healthy lives.


There are brilliant scientists and powerful donors working to find a cure.


We see many reasons to hope and we'd like to share them with you.

About neurofibromatosis

Neurofibromatosis (NF) encompasses three distinct genetic disorders, all arising from mutations in the NF1 gene.



  • The NF1 gene.

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  • The 3 NF conditions.

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  • What can parents and caregivers do?

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We were

Made

for

freedom


our core values

faith. community.

Path Church is a community of diverse people from all walks of life, who have decided to give Jesus the ultimate power and trust. This means we believe He will help us do what we can’t -forgive, transform, give back and nurture. We invite you to explore any of our recorded services (or stop by to see in person) to see Path's values and approach for yourself.

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our core values

LIVING LIFE INDIVIDUALLY,

TOGETHER

Men and women everywhere are born to live together, not alone.  As a closed-knit church, we believe we can all walk along our individual paths, together. With a strong shared sense of His love, each member of the Path community can find a way to live a wholesome life of faith while sharing the struggles, happy moments and wishes with other members of the church.

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Lone

Wolves

die


There

is

no

plan

b


our core values

make our world

better

At Path church we see it as an imperative to consider the environment He has created for us. It is our duty to keep Earth clean and sustainable for the next generations. To make this happen, we take actions in addition to prayer. Find our how you can join the Better Earth group of the church, and volunteer in parks and beaches in our area.

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VISION + MISSION

inform     |    research     |    accelerate

Our team

An NF family.

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get news on NF research

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