Michael J. Dowling, far right, president and CEO of North Shore-Long Island Jewish Health System, welcomed some of the guests at one of a series of open house meetings for community leaders at Franklin Hospital Medical Center, which is now a fully owned part of the Health System.Over 125 people, including politicians, school and church leaders and members of various business and civic associations, were invited to attend one of three meetings during February and March. The guests received a tour of the hospital to see the extensive renovations taking place throughout the facility and to learn about the upgrades being made in all areas of patient care.
Third annual Swim-a-thon at Winthrop
Summer is still officially two months away, but now is the time for swimmers of all ages and abilities to unpack your bathing suits and trunks and get ready to "pledge to swim for a healthy future" at Winthrop-University Hospital's third annual Swim-A-Thon.The event, which will be held Sunday, April 18 at the Hofstra University Swim Center from 7 a.m. to 11:30 a.m., will benefit Winthrop's Pediatric "Fund the Future," a major initiative to help fund the construction of Winthrop's new 15,000 square foot Pediatric Inpatient Center. This modern and family centered-facility is dedicated to the special needs of the Hospital's youngest patients and their families. Open to swimmers ages six to 60 and over, Winthrop's 3rd annual Swim-A-thon promises to be an exciting time complete with coaches from Total Immersion (the leading teacher of improvement minded swimmers), music from the Mineola High School Jazz Band, a massage therapist, and great prizes. Last year's Swim-A-Thon raised more than $15,000 to benefit the Pediatric Fund for the Future. Participants should as their family, friends and business associates to sponsor them by pledging dollars for laps. The more laps they swim, the more money raised for the fund and the greater chance to win a prize. Registration is $20 for adults and $10 for children ages six to 18. For more information or for a registration form, call 516-663-4403.
LIAF April 2004 calendar of events
The Long Island Alzheimer's Foundation is hosting a number of events this month. For more information or to register for events, call 866-789-5423.Thursday, April 8: "Identifying Alzheimer's: The Early Stage" will be held at 7 p.m. at The Bristal at North Woodmere, 477 Hungry Harbor Road, North Woodmere. The event is free. Monday, April 12: LIAF training workshop for dementia professionals, "Stress: Tools for Offering Optimal Care," 10 a.m. to noon at Long Island Alzheimer's Foundation, 5 Channel Drive, Port Washington. The workshop is $40.Tuesday, April 20: LIAF 10th Annual Outstanding Service Awards Luncheon, from 11:30 a.m. to 2:30 p.m., at the Garden City Hotel, 45 7th St., Garden City. The event is $55. Call for reservations.Wednesday, April 21: "All About Forgetfulness" workshop, from 11 a.m. at the JASA-Rockaway Park Senior Center, 121-16 Rockaway Beach Blvd., Rockaway Park, NY. The event is free.Saturday, April 24: LIAF Asian "Coping and Caring" Conference, from 11:30 a.m. to 3:30 p.m. at the Sheraton LaGuardia East Hotel, 135-20 39th Avenue, Flushing. The event is free.
Hope for patients with rare disorder
Twenty years ago, little was known about Prader-Willi Syndrome (PWS), a rare genetic disorder that once baffled doctors and eluded diagnosis. Babies born with PWS are often described as "floppy," lacking muscle tone and are often born without the sucking reflex, inhibiting their ability to feed. Even one decade ago, PWS was an anomaly, yet it affects one in every 10,000 to 15,000 birth every year in the United States. Now, thanks to a team of genetic specialists at Winthrop-University Hospital, PWS is being brought to the forefront, offering patients a place where their differences are only mere obstacles that can be overcome. Dr. Moris Angulo, a pediatric endocrinologist and genetic specialist at Winthrop, established one of the largest Prader-Willi syndrome centers in the country. Winthrop's Division of Pediatric Endocrinology and Genetics has more than 300 PWS patients in its care and has helped establish three local PWS group homes with trained personnel for the care of adult individuals. Today, the practice sees individuals from all over the United States, and over the years has successfully managed the disorder in hundreds of pediatric patients, helping them grow into-high functioning adults.PWS is caused by a sporadic defect in chromosome 15 and is typically characterized by low muscle tone at birth, short stature, cognitive disabilities, incomplete sexual development and feelings of insatiability that can lead to excessive eating and life-threatening obesity and behavior problems. It is believed that many of these features arise from a dysfunction in the region of the brain known as the hypothalamus, which controls appetite and satiety as well as the release of certain hormones including growth hormone. Obesity in childhood and adolescence is of main concern and behavior management and modification if important. Because PWS kids have a low metabolic rate and seemingly unending appetite, the need to limit caloric intake is paramount for staving off obesity and the negative effects on health. Early diagnosis and parental education is key in helping prevent obesity including diabetes, heart disease and respiratory problems.Another common characteristic is short stature, affecting 80 to 100 percent of PWS patients. Clinical studies have demonstrated that PWS children have growth hormone (GH) deficiency, inhibiting their growth potential, especially as they reach puberty. Reports on the use GH have shown improvement in the growth velocity, muscle mass and strength, as well as a decrease in overall body fat. As more information on PWS is gathered, more services are becoming available to help the management of the disorder and its symptoms. Early intervention including speech and physical therapy has proven to be very helpful in children with cognitive delays and in building and maintaining muscle mass.Parental and familial support groups run by the division's genetic counselor have also played a key role in the management of PWS and the emotional issues that arise in those caring for PWS children and adults. Additionally, a pediatric endocrine nurse practitioner provides personal and compassionate care to patients."The most important thing for everyone to remember is that underneath this syndrome is a person," Angulo said. For more information on PWS and the Division of Pediatric Endocrinology and Genetics at Winthrop-University, call 516-663-3090 or 1-866-WINTHROP.Compiled by Robert Remler/Health Editor
