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Patients

In this fight you will never walk alone. Here you will find information about and links to the resources you will need for your fight.

We are here to help. In any way that we can.

In addition to the resources you need for your fight, you will find in these pages a community full of truly incredible people. Sharing life, love, laughter, tears, hope, fear, and courage. We are so glad you found us.

If you don’t understand something, have additional questions or just want to talk to someone else going through this fight, click here and send us an email.

Our Stories

Courage. Community. Compassion. All traits these patient stories share.
In this fight you will never walk alone.

Our Stories

Sandy Morris

I was diagnosed on January 6, 2018 at the age of 51. I did not cry when the doctors grimly told me my prognosis. I am on a mission to ensure that protocol is created in my lifetime for a group of people who deserve it.

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Our Stories

Cory Burell

Every day a piece of my functionality dies, every day I know it’s one less day I’ll see my children, every day I know it’s one less day I’ll be able to tell my wife I love her. I am not giving up and my family is not giving up until a CURE is found.

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