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Policy Matters: One Dad's Journey

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Manage episode 297439473 series 2702939
Content provided by Matthew Zachary and Matthew Zachary Worldwide. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Matthew Zachary and Matthew Zachary Worldwide or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://podcastplayer.com/legal.

On the show today, Nick Kirchhof, a volunteer state ambassador in Colorado and member of the newly established Policy Steering Committee for NORD's Rare Action Network. Nick and his wife were welcomed into the club no one asks to join when their daughter Hayden was diagnosed with an extremely rare condition known as Cystinosis. In navigating these new waters, they found NORD and the Cystinosis Research Foundation, which offered up much-needed peer support and resources. Hayden's future is bright these days, and Scott has channeled his Soccer Coach instincts with his Father's lobbying skills into becoming an outspoken patient advocate and storyteller at the legislative level. Now he is paying it forward with many others who are part of NORD's Rare Action Network. Policy is the end game because that is what unites the rare community with systemic changes that can make all of our lives better en masse. Enjoy our conversation.

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

  continue reading

39 episodes

Artwork
iconShare
 
Manage episode 297439473 series 2702939
Content provided by Matthew Zachary and Matthew Zachary Worldwide. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Matthew Zachary and Matthew Zachary Worldwide or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://podcastplayer.com/legal.

On the show today, Nick Kirchhof, a volunteer state ambassador in Colorado and member of the newly established Policy Steering Committee for NORD's Rare Action Network. Nick and his wife were welcomed into the club no one asks to join when their daughter Hayden was diagnosed with an extremely rare condition known as Cystinosis. In navigating these new waters, they found NORD and the Cystinosis Research Foundation, which offered up much-needed peer support and resources. Hayden's future is bright these days, and Scott has channeled his Soccer Coach instincts with his Father's lobbying skills into becoming an outspoken patient advocate and storyteller at the legislative level. Now he is paying it forward with many others who are part of NORD's Rare Action Network. Policy is the end game because that is what unites the rare community with systemic changes that can make all of our lives better en masse. Enjoy our conversation.

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

  continue reading

39 episodes

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