Gracie van Brunt – singer, songwriter, and rare disease advocate – shares her story in a podcast.

Gracie - a young adult SDS patient in the US, shares her story on how she found her voice in a great interview on Eureka's Sounds of Science Podcast, including samples of her music. Thank you, Gracie!

Gracie van Brunt


"My Rare Disease Does Not Define Me"

Listen to the podcast and read some snippets, here: https://eureka.criver.com/podcast/e27-my-rare-disease-does-not-define-me.

Gracie, who was diagnosed at a young age with the rare disease Shwachman-Diamond Syndrome (SDS), started quarantine in June 2019 after a bone marrow transplant. Just as she was ready to emerge, COVID-19 struck, pushing everyone into quarantine with her.


"Everyone’s in quarantine and everyone has to follow the same precautions and everyone has to have this dark cloud of the coronavirus hanging over their heads. And I’m so baffled sometimes because everyone is literally in the same boat that I was in for so long..." -- Gracie

Check out Gracie's music, for example "Run, Run, Run".

https://youtu.be/w32wpnNWXtg

And her YouTube channel: https://www.youtube.com/c/GracieVanBrunt/videos


Shwachman-Diamond Syndrome Alliance

To advance treatments and finding a cure for Shwachman-Diamond Syndrome.

Contact us:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441
          Woburn, MA 01888

Shwachman-Diamond Syndrome Alliance is a US based not-for-profit 501(3)c corporation, serving the global SDS community.

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