Frank R

I advocate for the Sarcoidosis Community for all of those who can't advocate for themselves!

http://www.sarcoidosisofli.org/
Sarcoidosis of Long Island has grown into an advocating organization to fight for the rights of people who have this rare disease called Sarcoidosis. We fight for those who can't fight for themselves. We work with local, county, state and national government officials to gain recognition and raise awareness for this rare terrible disease Frank Rivera- President- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Thrive Global- Author and Blogger Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raised awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. Frank was nominated by Global Genes, a nonprofit that serves the rare disease community, for advocate of the year. Global Genes has also nominated Frank for their annual Rare Champion of Hope award. He has also been nominated for seven awards by WEGO Health partners over four years, Patient Leader Hero as well as Best Kept Secret, Lifetime Achievement Award and Best in Show Blog. He was also nominated by RDLA for advocate of the year. In December 2017 Frank was named People of the Year in the newspaper organization TBR News Media six newspapers one being The Village Beacon Record News. In 2018, Frank was interviewed by NBC Nightly News about the “Right To Try” bill. They did a whole segment on his struggles and strength dealing with these diseases. In 2019, Frank Rivera has promoted Awareness for Sarcoidosis with a billboard in New York Times Square on multiple occasions. Posting Sarcoidosis events, and Sarcoidosis of Long Island and Sarcoidosis patients getting a chance to show their faces in Times Square and their stories. He has also been in multiple television,podcasts and radio interviews both local and nationally raising Awareness all while being downgraded from chronic to terminally ill. He refuses to let his illnesses win and take over his life. His motto is "I have Sarcoidosis but it doesn't have me!" In 2019 his organization has worked on the motto of #YouAreNotAlone. Making sure no Sarcoidosis, and all rare disease patients know they are not alone and we are here for them for advice, support and will help find medical and mental health professionals when needed.
Displaying stories 1-11 of 11 in total
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Things I Should of Said

by Frank R
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WHY THIS THING CALLED ADVOCATING!

by Frank R
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When Doubt in Advocating Creeps In

by Frank R
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A Birthday that was not Suppose to Happen!

by Frank R
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May is Mental Health Awareness Month!

by Frank R
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What does Terminally Ill Means To Me!

by Frank R
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Another Bump in the Road!

by Frank R
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Right to Try

by Frank R
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Depression and I

by Frank R
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Mental Health for a Rare Disease Patient

by Frank R
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My Life as a Rare Disease Patient

by Frank R

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People look for retreats for themselves, in the country, by the coast, or in the hills . . . There is nowhere that a person can find a more peaceful and trouble-free retreat than in his own mind. . . . So constantly give yourself this retreat, and renew yourself.

- MARCUS AURELIUS

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