Big City Hope

In New York City, for the first time in my life, I watched snow falling from the sky, saw dinosaurs at a museum, and went inside an MRI machine.

“In New York City, for the first time in my life, I watched snow falling from the sky, saw dinosaurs at a museum, and went inside an MRI machine.” –Emma’s Garden: Growing with Gaucher 

With the New York City Marathon less than two weeks to go, I wanted to share why the Big Apple is such a magic location on my family’s journey with a rare disease. Earlier this year, I had an opportunity to speak on the theme of game changers for the rare disease community as part of a young patient advocates panel at the European Conference on Rare Diseases & Orphan Products in Edinburgh. I began by sharing the story of being taken as a child to Mount Sinai Hospital in New York City to be seen by specialists.

Watch a short clip:

“This trip was the first time that they [my parents] had any connection to news about the Gaucher community…The information meant that they were able to leave with hope and a feeling of being less alone.”

New York won’t be my first marathon but it means a lot to me to have the chance to run in this city, as part of this team, and for my community partner and friend Jen. I run with hope for Gaucher disease (type 1, 2 and 3), for hypoparathyroidism, and for all those still seeking the correct diagnoses. #weruntogether

Support My Run


The complete young patient advocates panel from ECRD 2016 is available from EURORDIS (The European Organisation for Rare Diseases). Visit EURORDIS TV for more videos.

Posted in Patient Stories, Running Stories
4 comments on “Big City Hope
  1. Jen says:

    Thank you, Emma, for the friendship and support over these last months. And for the hope. I can’t wait to cheer you on in NYC! Go get it!
    #weruntogether

    • Emma Rooney says:

      It’s hard to believe that we haven’t met in person yet Jen. Thanks for making this run possible. I would not be this close without your friendship and support. Can’t wait for an in person hug,
      Emma

  2. Anne Burtenshaw says:

    Our family is looking forward to sharing this experience with you. You are a great advocate for rare diseases Emma.

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