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Brittany - Rare Journeys

In the Rare Journeys hub, discover stories from people in the rare disease community.

Explore all of the stories across AADC deficiency (AADCd), Duchenne, Friedreich ataxia (FA), Huntington’s disease (HD), phenylketonuria (PKU), or spinal muscular atrophy (SMA), or choose stories from a specific condition using the “sort by” button. Click on the tile to read the story.

    Luke & Elliott: Two Paths to Duchenne
    December 5, 2023
    Luke & Elliott: Two Paths to Duchenne
    The bond between Luke and Elliott, who lives with Duchenne, is the foundation for new life paths.
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    Owning Your Rare Disease Story
    December 3, 2023
    Owning Your Rare Disease Story
    Kevin, who lives with PKU, shares his passion for storytelling.
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    Jessica's Many Crowns and Titles - Including Duchenne Advocate
    November 21, 2023
    Jessica’s Many Crowns and Titles – Including Duchenne Advocate
    Jessica uses her platform and titles, including Mrs. NY International, to advocate for Duchenne.
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    Improving Workplace Outcomes for People With Disabilities
    November 2, 2023
    Improving Workplace Outcomes for People With Disabilities
    Felix channels his passion and studies to changing the workplace for people with disabilities.
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    The Rebel in a Wheelchair
    October 23, 2023
    The Rebel in a Wheelchair
    Despite living with SMA, there’s not much that Juan hasn’t already achieved.
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    The Primary Catalyst
    September 25, 2023
    The Primary Catalyst
    In any conversation about patient advocacy for Duchenne, Pat Furlong’s name is bound to come up.
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    If There’s a Will, There’s a Way
    August 9, 2023
    If There’s a Will, There’s a Way
    Arya lives with SMA, but that doesn't stop her determination and drive.
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    Living Independently Gives Philip a New Perspective
    July 17, 2023
    Living Independently Gives Philip a New Perspective
    For Philip, "everything is possible if you look at it from a different lens."
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