Community walks for sarcoidosis awareness at Heritage Park

Community leaders and residents came out despite the weather April 20 for the 5th annual Sarcoidosis of Long Island Awareness Walk at Heritage Park.

Councilwoman Jane Bonner (R-Rocky Point), State Sen. Ken LaValle (R-Port Jefferson), along with residents, community leaders, friends and families all participated in the day’s events. 

Sarcoidosis of Long Island has grown into an organization to fight for the rights of people who have sarcoidosis, a rare disease characterized by the formation of tiny clumps of inflammatory cells in one or more organs of the body. These clumps can interfere with an organ’s structure and function. Symptoms could include chest pain, seizures, meningitis, swelling of the joints, hearing loss and blurred vision. 

Frank Rivera founded Sarcoidosis of Long Island in 2012 after being diagnosed with the disease in 2011. He has been a local, state and federal advocate for sarcoidosis awareness and has spoken at two congressional briefings. He is a national ambassador for the Foundation for Sarcoidosis Research, a Global Genes RARE Foundation Alliance member and advocate, an ambassador for the EveryLife Foundation for Rare Diseases and a working group member.

“Frank and Diana Rivera have dedicated their lives to helping the Sarcoidosis of Long Island families,” Bonner said. “I am proud to do whatever I can to help them raise awareness and find a cure for those who suffer from this debilitating disease.”

For more information about Sarcoidosis of Long Island, go to www.sarcoidosisofli.org. Readers can learn more about sarcoidosis by watching “In the Spotlight … Sarcoidosis Awareness” on Channel 18 On Demand at www.BrookhavenNY.gov.