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Rivera is honored by members of Brookhaven Town Board for his advocacy and support work surrounding the disease. Photo from Councilwoman Cartright's office

By Jennifer Sloat

He has been called an angel, the personification of goodness and strength, a champion of the underrepresented and an inspiration. Frank Rivera is all of that and more.

Rivera is the founder and president of Sarcoidosis of Long Island, an awareness and advocacy group for sarcoidosis, a rare and often debilitating disease from which the Coram resident is suffering. In 2004 at the age of 36, he received an incorrect diagnosis of lung cancer for which he underwent treatment. The X-ray showed lumps in his lungs. It was after a hospital visit in 2011 for abdominal pain that he was correctly diagnosed with sarcoidosis.

Frank Rivera, at center, cuts a ribbon at Mount Sinai’s Heritage Park to signal the start of his Sarcoidosis Awareness 5K. Photo from Councilwoman Cartright’s office

Things got even tougher for Rivera as complications from the disease arose. It attacked his neurological system, eyes and gallbladder. In April 2012, he went back to the hospital with more stomach cramps and learned his colon had ruptured. He contracted sepsis and nearly died.

Through it all Rivera continues to fight, not only for his own health, but for the health of others affected by the disease. His organization raises awareness for sarcoidosis patients at local, state and federal levels, and helps them find doctors and treatment.

Suffolk County Legislator Sarah Anker (D-Mount Sinai) said Rivera came to her office a few years ago and told her his story and idea to start a not-for-profit organization.

Anker said his tireless work with elected officials and medical research experts have provided him the guidance and resources to help residents dealing with sarcoidosis.

“He has accomplished so much,” Anker said. “It was his goal, and it remains his goal.”

County Legislator William “Doc” Spencer (D-Centerport), a practicing ear, nose and throat physician, said when he heard Rivera was creating awareness, he reached out to lend support. Spencer, who lost his mother to the disease, said he was fascinated by the work Rivera does.

“It hit close to home,” the legislator said. “Many have not even heard of the disease.”

Spencer said that what Rivera has done also generated a lot of funding to aid sarcoidosis patients in seeking medical attention and emotional support.

“I hope to continue to support him,” he said. “I hope to see him do more great things for those who don’t have champions.”

Some of the organization’s efforts include a health fair and a 5K run/walk at Heritage Park in Mount Sinai.

“He gets folks together to share ideas and stories, and to support one another,” Anker said. “It is amazing what Frank has done considering he is dealing with his own challenges, both physical and mental.”

The Town of Brookhaven celebrates National Sarcoidosis Awareness Month in April, and it’s a direct result of Rivera’s work and dedication.

“The town board has learned an overwhelming amount about the misconceptions surrounding sarcoidosis and the hurdles patients face who are suffering from rare diseases,” said town Councilwoman Valerie Cartright (D-Port Jefferson Station). “This is due in large part to Frank’s efforts. Listening to Frank speak about his personal experiences is a testament to his strength of character.”

In an interview with RARE Daily, a Global Genes patient advocacy organization, Rivera said his focus is helping others with hardships before worrying about himself.

“There are 200,000 sarcoidosis patients,” he said. “I always consider myself a representative for those 200,000 patients. I always think about what they need.”

Anker said despite his own struggles he’s always being positive to inspire others to have the will to get through the tough times.

“He always has a smile on his face and goodness in his heart,” Anker said. “His mind is going 1,000 miles an hour to accomplish what he has set out to do. He has been able to accomplish so many of his goals.”

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Members of the Comsewogue High School girls varsity and junior varsity field hockey team dump water on themselves at the second annual ALS Ice Bucket Challenge on Wednesday Aug. 26. Photo by Giselle Barkley

As the president of the Port Jefferson Station Teachers Association, Beth Dimino is rarely hit in the face with whipped cream. But on Aug. 26, Dimino sat wearing a large black garbage bag as whipped cream from a pie toss dripped down her face and body — all in support of the second annual ALS Ice Bucket Challenge at Heritage Park in Mount Sinai.

Hundreds of people attended the event, which aimed to raise awareness of amyotrophic lateral sclerosis and money for research into the disease, through the Stony Brook-based organization Ride for Life. People who purchased a ticket could trade it for a chance to throw a whipped cream-filled plate at volunteers like Dimino.

Councilwoman Jane Bonner (C-Rocky Point) was one of many, including local school principals and teachers, to participate in the event’s dunk tank or pie-throwing games. For Bonner, supporting the cause is important, as her grandfather died from the rare disease around 35 years.

“It robs your body, not your mind,” Bonner said.

ALS affects nerve cells in the brain and spinal cord, causing motor neurons to degenerate. People with the disease lose control over their muscles, leaving them unable to speak, eat, move or breathe on their own. The cause of the disease is not yet known.

Bonner jumped at the chance to participate in the event this week.

“Chris just makes you want to [be involved],” she said about Christopher Pendergast, who founded Ride For Life in 1997 and has lived with the disease for more than 20 years. “He just inspired so many people to participate and bring awareness.”

According to Ray Manzoni, a member of the Ride For Life Board of Directors, Pendergast wanted to make this year’s event at Heritage Park bigger and better than last year’s ice bucket challenge, which focused on the ice bucket challenge itself.

Last year’s event occurred during the height of a worldwide trend in which people dumped buckets of ice water over their heads, and challenged others to follow suit, in order to bring publicity to the disease. Lori Baldassare, president of the Mount Sinai Heritage Trust, Bonner and Legislator Sarah Anker (D-Mount Sinai), all of whom attended this year’s event, were “instrumental in getting [the event] approved quickly” last year, according to Manzoni. That inaugural event was organized in four days.

Manzoni said this year they added the pie-tossing event, balloon twisting and face painting booths, cotton candy, hot dogs and more.

The Comsewogue girls’ varsity and junior varsity field hockey teams were also at the event. While many of them were dancing to the music there, they also donated money and helped organize the buckets for people to dump water on themselves or others during the ice bucket challenge. The buckets were arranged at the end of the event to spell out “ICE ALS.”

“The goal is to have this and other events that Ride For Life supports and make them bigger and better,” Manzoni said.

Although he did not know how much money the group raised this year, Manzoni hoped it matched or exceeded the amount of money raised last year, $5,000. He added that successful research into ALS can also help research for Alzheimer’s and Parkinson’s disease, which are more common but have similarities.

According to the ALS Association’s website, the disease affects around 6,400 people annually in the United States alone. Only 10 percent of people who are diagnosed with the disease inherited it, while the rest are affected by the disease at random.

For people and organizations like Ride For Life, these events are important.

The goal is “to build awareness and money so that we can continue [our efforts],” Manzoni said.

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To date, 80 mosquitoes and seven birds test positive for virus in Suffolk

Stock photo

Nine more mosquitos and two birds have tested positive for West Nile virus in various neighborhoods across Suffolk County, Health Commissioner Dr. James L. Tomarken announced on Monday.

The mosquito samples, collected from Aug. 11 to 14, hailed from Huntington, Selden, West Babylon, Bay Shore, Holbrook, Farmingville and Watch Hill on Fire Island. A crow collected on Aug. 14 from Stony Brook and a blue jay, collected on Aug. 18 from Smithtown, also tested positive for the virus.

To date, this year Suffolk’s total West Nile count comes to 80 mosquitos and seven birds. No humans or horses have tested positive for the virus in Suffolk this year.

First detected in birds and mosquito samples in Suffolk in 1999, and again each year thereafter, the virus is transmitted to humans by the bite of an infected mosquito.

While Dr. Tomarken said there’s no cause for alarm, the county is urging residents to reduce exposure to he virus, which “can be debilitating to humans.”

“The breed of mosquito known as Culex pipiens-restuans lay their eggs in fresh water-filled containers, so dumping rainwater that collects in containers around your house is important,” he said.

Residents should try to eliminate stagnant water where mosquitos breed, in order to reduce the mosquito population around homes. That includes: disposing of tin cans, plastic containers, ceramic pots or similar water-holding containers; removing discarded tires; cleaning clogged gutters; turning over plastic wading pools and wheelbarrows when they’re not being used; changing the water in bird baths; and draining water from pool covers.

Most people infected with West Nile will experience mild or no symptoms, but some can develop sever symptoms including high fever, headache, neck stiffness, stupor, disorientation, coma, tremors, convulsions, muscle weakness, vision loss, numbness and paralysis. The symptoms may last several weeks, and neurological effects may be permanent. Individuals — especially those 50 years of age or older or those with compromised immune systems, who are most at risk — are urged to take precautions to avoid being bitten by mosquitoes.

Residents are advised to avoid mosquito bites by minimizing outdoor activities between dusk and dawn; wearing shoes and socks, long pants and long-sleeved shirts when outdoors for long periods of time, or when mosquitos are more active; using mosquito repellant when outdoors and following label directions carefully; making sure all windows and doors have screens and that all screens are in good condition.

To report dead birds, call the West Nile virus hotline in Suffolk County at 631-787-2200 from 9 a.m. to 4 p.m., Monday through Friday.  Residents are encouraged to take a photograph of any bird in question.

To report mosquito problems or stagnant pools of water, call the Department of Public Works’ Vector Control Division at 631-852-4270.

For medical questions related to West Nile virus, call 631-854-0333.

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County: 26 samples collected last month bring total up to 46 this year

Stock photo

Twenty-six mosquito samples and one bird have tested positive for the West Nile virus in various parts of Suffolk County, Dr. James L. Tomarken, the county’s health commissioner, announced on Friday.

The bird, an American crow, was collected on July 31 from Port Jefferson. All the mosquito samples that came back positive were collected on July 29, according to the county. Five of them were from West Babylon, four were from Farmingville and three were from Lindenhurst; as well as two samples each from Northport, East Northport, Huntington Station, Nesconset and Port Jefferson; and one sample each from Greenlawn, Selden, North Babylon and West Islip.

To date this year, 46 mosquito samples and four birds have tested positive for West Nile virus.

The virus was first detected in birds and mosquitoes in Suffolk County in 1999. It is transmitted to humans by the bite of an infected mosquito. No humans or horses have tested positive for West Nile virus in Suffolk this year.

While Dr. Tomarken said there’s no cause for alarm, he urged residents to take steps to reduce exposure to the virus.

Residents should eliminate stagnant water, where mosquitos breed. Popular breeding grounds include tin cans, plastic containers, ceramic pots, discarded tires, wading pools, wheelbarrows and birdbaths. In addition, residents can make sure their roof gutters are draining properly, clean debris from the edges of ponds and drain water from pool covers.

Minimize outdoor activities between dusk and dawn to avoid mosquito bites, make sure windows and doors have screens and wear clothing that covers you when outdoors for long periods of time, or when mosquitos are more active.

To report dead birds, which may indicate the presence of the virus, residents should call the county’s West Nile virus hotline at 631-787-2200 from 9 a.m. to 4 p.m., Monday through Friday. Residents are encouraged to take a photograph of any bird in question.

To report mosquito problems or stagnant pools of water, call the vector control division at 631-852-4270.

For medical questions, call 631-854-0333.

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Participants paddle across Northport Bay in a previous Distant Memories Swim. File photo by Rohma Abbas

Alzheimer’s Disease Resource Center, Inc. announced that Bryan Proctor, a Huntington resident and a physical education teacher, will lead a team of swimmers in the 12th Annual Distant Memories Swim on Tuesday, July 28, to draw attention to the disease that impacts more than 60,000 families on Long Island.

In its lifetime, the swim has raised in excess of $100,000 for those with Alzheimer’s disease and their unpaid caregivers. Opening ceremonies are expected to begin at 9 a.m. Proctor and his teammates will take to the water at 9:15 a.m.

The swim will start at Asharoken Beach and move across Northport Bay to Knollwood Beach in Huntington — a distance just under three miles. The swim will also help raise funds for Alzheimer’s Disease Resource Center, Inc. The goal is to raise $20,000.

The issue is close to Proctor, as his grandfather and aunt died from the disease.

“Bryan is a champion for those with a diagnosis of Alzheimer’s disease,” said Mary Ann Malack-Ragona, executive director and CEO of Alzheimer’s Disease Resource Center, Inc. “He is a role model for the youth of our country.”

Over 5 million people in this country are currently living with Alzheimer’s.

“It is my hope that substantial funds will be raised to assist Alzheimer’s Disease Resource Center,” Proctor said.

For more information about this event, visit www.memoryswim.org. For more information about ADRC, please contact Malack-Ragona  at (631) 820-8068 or visit www.adrcinc.org.

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A deer tick is a common type of tick on Long Island. Stock photo

As Long Islanders are warned about an uptick in Lyme disease, another tick-borne virus has emerged in Connecticut across the Long Island Sound.

Nearly 12 years ago, Eric Powers, a biologist and wildlife educator, noticed an increase in the tick population at Caleb Smith park in Smithtown, after pulling nearly 40 ticks off a group of his students.

Powers conducted a survey of the park and discovered the population of tick predators had decreased, as feral and outdoor house cats either chased them off or killed them.

“It’s becoming a huge nationwide issue with our wildlife,” Powers said during a phone interview. “Wherever people are letting their cats out, we’re seeing this disruption in ecosystem where these tick predators are gone.”

But what Powers did not find was the prevalence of a tick-borne virus, the Powassan virus, which recently appeared in Bridgeport and Branford in Connecticut.

Between 1971 and 2014, 20 cases of POW virus were reported in New York, according to the Cornell Cooperative Extension in Suffolk County. The Centers for Disease Control and Prevention reports the virus has been found in Maine, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Virginia and Wisconsin.

Like Lyme disease, the virus can cause long-term neurological problems if left untreated. But Long Island POW virus incidences remain low despite the increase in tick population, according to Daniel Gilrein, an entomologist at Cornell Cooperative Extension.

POW virus, which is related to the West Nile virus, was first identified in Powassan in Ontario, Canada, in 1958 after a young boy was bitten by an infected tick.

Little is known about how much the tick population has exactly increased on Long Island, but Tamson Yeh, pest management and turf specialist for the Cornell Cooperative Extension, said it is unlikely cats are contributing to the increase by eating tick predators like birds.

“Birds will eat ticks, but not all birds are insect eaters,” Yeh said in a phone interview.

She said the snow cover during the winter months served as insulation for the ticks hiding in the ground, which helped them survive during the colder weather.

Richard Kuri, president of R.J.K. Gardens, a St. James-based landscaping company, has not noticed an increase in tick population recently. Regardless, he and his men continue to wear long sleeves and use a variety of sprays to ward off bugs while on the job. Kuri also said people may use more natural remedies to deter ticks.

“There are people who apply peppermint oil and rosemary mix that will help,” Kuri said. “But none of them are cure-alls.”

He added that granular insecticides, like Dylox, help kill a variety of unwanted bugs including ticks carrying viruses like Powassan.

There are two strains of the virus, which are carried by woodchuck and deer ticks. Since only about 60 cases of POW virus were reported in the United States in the past 10 years, Yeh said the chance of encountering POW virus is unlikely since the virus is rare.

Symptoms of the virus include fever, headaches, vomiting, weakness, confusion, drowsiness, lethargy, partial paralysis, disorientation, loss of coordination, speech impairment, seizures, and memory loss. Other complications in infected hosts may possibly arise, such as encephalitis, inflammation of the brain and meningitis.

Powers said he hopes to reduce tick population on Long Island through his quail program. He encourages local teachers, who use chicks or ducklings to educate their students about the circle of life, to raise bobwhite quails. He said releasing these quails annually will not only help them adjust to the presence of cats, but also control the tick population.

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