Farmingville, NY – On March 30, Supervisor Ed Romaine (right), Councilman Dan Panico (left) and Councilwoman Jane Bonner (second from left) presented a proclamation to Sarcoidosis of Long Island founder Frank Rivera declaring April as Sarcoidosis Month in the Town of Brookhaven. The organization supports people afflicted with 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. You can learn more about Sarcoidosis by watching “In the Spotlight… Featured Town Videos” on Channel 18 On Demand on the Town website.
Mr. 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 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 and a Working Group Member. For more information about Sarcoidosis of Long Island, go to www.sarcoidosisofli.org.
In 2021 Frank, Cathleen Terrano, Kerry Wong and Cheryl Bradford, other NY Sarcoidosis patients, formed a new non-profit organization called Stronger Than Sarcoidosis to help other Sarcoidosis Patients, Caregivers and Family members know #YouAreNotAlone. www.strongerthansarcoidosis.org. Frank has adapted to virtual reality due to the pandemic by having A National Virtual Support Group, held twice a month and he had two Virtual Forums on Social Justice with NYS Supreme Court Justice Valerie M. Cartright and Mental Health Care Forums. On April 13, from 7:00 pm to 8:30 pm, Mr. Rivera is hosting part two of a virtual forum that combines the past two forums as a follow up for Sarcoidosis patients, caregivers, and family members. The theme of the forum is to help patients adapt to the current and post-pandemic world. Go to www.sarc4justice.org for more information.
