Welcome to Courage Pages!  Creating a Courage Page provides an opportunity for your Family to share your unique story, including pictures, to assist you in raising awareness for MPS and related diseases. This page can be for in Honor or in Memory of someone with MPS or a related disease and can be used for Fundraising. What is important is that you decide!

Our hope is that through Courage Pages, you are enabled to share your rare disease story with loved ones, friends, colleagues, physicians, legislators and anyone that wants to learn more about MPS and related diseases. Your story can include multiple photos and be updated as often by you as often as you like!

This is a terrific platform for raising funds and to tie into a fundraising event, you decide! Families have raised over $100,000 through Courage Pages and allocated the funds as they wanted – whether this is for syndrome specific research, family support or legislative efforts.

Ready to get started?

First begin by registering for your new page!  Register now.

We have created these detailed directions to help you with registering, creating and editing your page. We will do our very best to keep directions updated during software changes.

Already have an account? Log in to the left under Update Page.

Want to visit other Courage Pages?

Please scroll through the list of Families and Friends that have a Courage Page below and click the link to access their page.  These can be viewed in alphabetical order by clicking on the arrows to the right of the Child’s Name header.

If you are interested in building your own webpage for your loved one it is easy!  If you prefer for the Society to build the page for you, please contact us. If you need a form mailed to you please contact Rebecca Luchenbill at [email protected] or call 919.806.0101.

Cooper Tippett

Syndrome: MPS IV

Cooper is an athletic, quick witted 7 year old. Although he happily and enthusiastically plays catch during his infusion, he is completely traumatized by the needle touching his skin. This heart wrenching rollercoaster of emotion repeats every week as he receives his life-saving medicine.

Easton Walker

Syndrome: MPS II

This courage page is for my son, Easton. Easton has encountered many obstacles since his birth on January 6th, 2017. He spent the first month of his life in the NICU, half of that time on a ventilator. He has since then had many procedures, tests, surgeries, hospitalizations, etc. On November 8th, 2017 when Easton was ten months old, we got the unfortunate diagnosis of MPS ll-Hunter Syndrome after his collaborative care team came together to find a diagnosis.

Faith Heard

Syndrome: MPS I

Faith Heard, 2 years old, is a beautiful miracle born at 27 weeks weighing just 770gm. After her 3.5 months of hospital stay due to her prematurity she was doing fairly well until September 29th when she got diagnosed with Hurler syndrome.

Our Mission

The National MPS Society exists to cure, support and advocate for MPS and ML.

Contact Us Family Support Programs