Rare Disease Advocate Nominated

Trina Massey Davis Start Date: Aug 26, 2016 - End Date: Sep 12, 2016
  • Leadership/Training Program
  • Professional Development
  • Educational/Research Trip
  • California, United States of America

My Travel Story

by: Trina Massey Davis Start Date: Aug 26, 2016 - End Date: Sep 12, 2016
  • Leadership/Training Program
  • Professional Development
  • Educational/Research Trip
Greetings,
I am a Sarcoidosis Survivor. Sarcoidosis is an multi-system, inflammatory auto immune disease. Sarcoidosis can affect any major organ, such as your eyes, lungs, heart, and skin. Just to name a few.
I was misdiagnosed for several years. Sarcoidosis mimic so many other diseases and can takes years for a proper diagnosis.

My advocacy started in 2014. After I went into sudden death mode. I woke one morning to an accelerated heart rate. We rushed to the nearest emergency room. By the time I was hooked up to the machines. My heartrate began go drop below 50. Hospice was called and shortly after I began to stablize. Sarcoidosis effected one of heatwave. Sarcoidosis can cause one to be debilitated and can even cause death.

I began advocating for my cause. I have coordinated 2 5K Walk n Run, received A Proclaimation for Sarcoidosis Awareness for the Month of April by the State of Georgia Governor Nathan Deal. I have written my staye senators and representatives which lead to a Congressional Briefing for the cause.

Just recently I was nominated through Global Genes out of 300 people in 7 countries for my advocacy.  This is what lead me to ask will you help me continue moving forward in my advocacy for Rare Disease Patient Advocacy Summit and Gala?

The Summit will be at Huntington Beach California at the Hyatt Regency from September 22-23 2016 and the Gala will be on September 24, 2016.

The summit will consist of educational tools on how to advocate for rare disease and how to educate our government and people like yourself.

I really want to participate in learning how to educate more and what do next with in my fight for a cause and to help find a cure.

Please with your help.It can change lives.

Thank you for reading my story as I continue to fight for a cause and a cure.

Best Regards,

Trina
  • California, United States of America

Updates

6

  • Sarcoidosis Congressional Briefing @ Capitol Hill

    Sarcoidosis Congressional Briefing @ Capitol Hill
    Fact Sheet 2
    The age adjusted incidence rate for Sarcoidosis among African Americans is over 3x that of Caucasians at 35.5 vs 10.5 cases per 100,000 population respectively.

  • Sarcoidosis Congressional Briefing

    Sarcoidosis Congressional Briefing
    Speaking engagement at a Congressional Briefing for Sarcoidosis, October 2015 @ Rayburn House Building @ Captiol Hill with Foundation for Sarcoidosis Research.

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