News and Views

26th Annual Golf Tournament

The tournament, an important fundraiser for the Organization, offered a day of fun and fellowship to more than 200 supporters who turned out to raise significant funds for NJSOCF's programs.

The August 14 event was once again held at two beautiful courses - the Ballyowen Golf Club and Wild Turkey Golf Club in Hamburg.

Golfers enjoyed a full day, including a barbecue lunch, hitting the links and an awards dinner and cocktail reception at the Crystal Springs Country Club.

"Thanks to all our committee members for recruiting golfers and sponsors, and donating prizes. We could never want a better group of people to make this event the success it has become year after year. My sincere appreciation for helping us continue the programs that have become essential to those who suffer with cystic fibrosis," said Executive Director Debra Sikkema.

Second Annual Suzie Girl Fireworks Cruise
Fun for All

Thanks again to the generosity of Jim Hull, owner of Jim Hull Sportfishing of Belmar, his boat, the "Suzie Girl" pulled out of its berth Thursday evening, July 30 with a full load of NJSOCF friends and supporters.

The 80-foot fishing boat is named after Jim's late wife, Susan Hull, who lost her brave life-long battle with cystic fibrosis in 2001.

The boat left the harbor and headed south through smooth waters along the Jersey Shore to Point Pleasant, where it dropped anchor for spectacular fireworks that started at 9 p.m.

Captain Jim" said he decided to hold the fundraiser as a way to thank NJSOCF for all of the help they gave his wife over a twelve-year period.

NJSOCF Executive Director Debra Sikkema said the event was another big success. "We all had a wonderful time," she said. "There was plenty of food, the weather was perfect, the fireworks unbelievable, and we all look forward to doing it again."

Margaret Lapsanski leads runners in half-marathon to raise funds for NJSOCF

"Lungs on the Run" a big success

Although the morning of June 3 dawned cool and rainy, the enthusiasm of double lung transplant recipient Margaret Lapsanski and her large group of friends and supporters was not dampened. They set out from the Ocean Promenade in Long Branch, determined to raise funds for the New Jersey State Organization of Cystic Fibrosis.

Margaret dubbed her effort "Lungs on the Run" and collected a total of $8,000 by leading her group of runners and getting sponsors to support her fundraising efforts in the Long Branch Half-Marathon.

Funds raised by the team and its sponsors were donated to NJSOCF, which provided financial and emotional support to Margaret and her family over the years.

"Í have been involved with NJSOCF since 1992, when I was their poster child," she said. "This race was the most rewarding and fulfilling experience. Finishing that marathon was the best feeling in the world."

Overcoming challenges
Margaret, now 24, was only three months old when she was diagnosed with CF.

"I was quickly put on a strict regimen of inhaled antibiotics and intense physical therapy that consisted of my parents pounding on my back to shake loose the mucous in my lungs. I was able to experience a rather normal childhood. However, as I grew older I was troubled with recurrent pneumonias and other lung infections that were treated with courses of IV antibiotics, but which still caused permanent and irreversible lung damage," Margaret said.

By the time Margaret was 20, her lungs were functioning at a mere 20% of normal capacity and she was on oxygen 24/7.

"I was told that without a double lung transplant, my chances for survival were bleak," she said "In November of 2004 I was blessed with a second chance at life and received two new, healthy donor lungs." Now, over four years later, Margaret's new lungs are functioning at 100%.

Margaret came up with the idea of helping to raise money for cystic fibrosis by running in the half-marathon. "What better way to raise funds than to get my friends and supporters to run 13.1 miles with me - a person who once could not walk four feet without a struggle," she said.

Margaret set about organizing her "Lungs on the Run" effort and received excellent support. She developed sponsor sheets and got the word out to the community. The results were outstanding, with 75 runners joining her fundraising effort, cheered on by hundreds more supporters.

The day of the race, Margaret admitted at the finish line that the last few miles were painful for her but she drew strength from her teammates, including childhood friends and family. The difference in my quality of life before and after the transplant is staggering and the fact that I ran this race proves it. I'm going to keep running and working out. I am very happy that I did this, both for myself and NJSOCF."

Seventh Annual Sunset Bowl

Participants in the Seventh Annual Brian K. Moser Memorial Sunset Bowl rolled another big "strike" this past May 9th. More than 100 bowlers turned out at the T-Bowl II Lanes in Wayne to raise funds to assist CF patients.

The fun-filled evening included bowling, pizza, prizes and a good time for all. The event is held each year in memory of Brian, who fought a brave life-long battle with the cystic fibrosis.

"We want to thank everyone that turned out for yet another successful fundraiser in Brian's memory," said his Mom, NJSOCF administrative assistant Bernice DeMeritt.

"He would be very proud to know he is helping other CF patients with the overwhelming day to day expenses of living with CF."

New Jersey's first lung transplant program marks successful year

New Jersey's only lung transplantation program, started in June of 2008, is now fully up and running at the Newark Beth Israel Medical Center (NBIMC), a member of the Saint Barnabas Health Care System.

As part of the Center for Advanced Heart and Lung Disorders and Transplantation Medicine at NBIMC, the lung transplant program offers New Jersey residents increased access to single and double lung transplantation.

The program is under the direction of Dr. Lawrence McBride and Dr. Sean Studer as the surgical and medical directors of the program.

New hope for patients
The transplant program gives hope to many CF patients who have waited patiently to receive single or double lung transplants.

Between the years 2000 and 2004 more than 330 New Jersey residents were registered for lung transplants. But during that same time, only 121 of them received the life-saving surgery, mostly at hospitals in Pennsylvania and New York.

Until the establishment of the new program, New Jersey was underserved in terms of lung transplants. Dr. McBride noted: "We are the 10th most populated state in the country and yet if we look at the top 25 most populated states, New Jersey was the only one without a lung transplant program. In 2007, there were 54 New Jersey donor lungs shipped out of the state to be transplanted in other programs."

The community outreach and patient education aspects of the new lung transplant program are being developed using the experience and expertise of the highly successful heart transplant program at NBIMC. The goal is to generate a collective awareness about the importance of organ donation so that those who want to donate will follow through.

"The new program provides better and more efficient care for the people of New Jersey," said Dr. Mark H. Zucker, director of heart failure treatment and transplantation at NBIMC. "It will increase organ donation, reduce the waiting time for transplants and ensure that people of all socio-economic classes have access to treatment."

"Breath of Fresh Air" Barbecue Raises
Funds to Honor Steven Rapp

"So many great people turned out to help make our first "Breath of Fresh Air" Barbecue a success that I can't even begin to thank them," said event chairwoman and organizer Ruthann Erickson of Little Egg Harbor. "We will be holding the fundraiser again next year and plan to make it bigger and better."

This year's event was held on a sunny Saturday, September 20 at the Manahawkin Elks Lodge #2340. Ruthann organized the event in memory of her beloved son, Steven Rapp, who lost his battle with cystic fibrosis in 2005.

"The event was a celebration of his life, and a way to raise funds to help more children and adults with CF by supporting the organization that assisted Steven throughout his lifetime," she said. "Whenever he needed equipment, medication, home IV treatments, or just moral support, the New Jersey State Organization of Cystic Fibrosis was always there to help. NJSOCF stood by him, as did his friends and family."

Ruthann said she was very pleased with the turnout for the first edition of the event, more than 130. "There were a lot of other things going on in our area on that same Saturday," she said. "So next year we will probably hold it late spring."

Ruthann said the Elks Club was "wonderful," donating their grounds, with a covered pavilion and picnic tables. "Our friends manned the barbecue grills, producing more food than we knew what to do with, donations were plentiful, and we had a live band, featuring country and western singer Jimmy White.

Ruthann said a young 17 year-old singer named Rachel Anles "brought the house down with a rendition of 'Angels in Waiting.' Her wonderful voice gave us goose bumps. There wasn't a dry eye there."

Young CF patients Cody and Tyler Anderson and Julie and Michael Maisto were on hand to enjoy the fun-filled day.

"All of the kids who came had a great time," she said. "The feedback I got was very positive and I am looking forward to planning next year's event to be an even bigger success."

Ruthann and her husband James have three grown children: Heidi, age 44; Fred, 43; and Jeffrey, 40. "They all loved their brother very much, miss him a lot, and were very happy to be able to help honor his memory with this wonderful first-time event," she said.
"I would like to thank every single person that came to the barbecue and helped make it a success with a special mention of Patti Springstead; Melissa Ulrich; Rachel Anles; and 'Lisa and Lenny.' I couldn't have done it without them."

New Book " Cystic Fibrosis and You"
says "Just Believe!"

"I put together my book, "Cystic Fibrosis and You," because I wanted to stress that living with CF requires a positive attitude and a strong belief in yourself," said author Emilie Sasso of Avenel. "I come from a family with three CF siblings and three CF cousins, so I have seen first-hand the effects the disease can have on emotions and attitudes."

The short book is filled with colorful illustrations done by Emilie and starts out with the challenge: "Anything is possible - if you believe."

Emilie offers positive advice for school-age children and follows through into the teen years and adulthood. Each page ends with "Just Believe!"

"My hope in writing this book is to give encouragement to children, teens, and adults with cystic fibrosis," Emilie says. "My sisters Bonnie and Kate accomplished everything in this book, and more, while living with CF. Never let CF hold you back from fulfilling your dreams and living life to the fullest. I hope everyone that reads the book will find special blessings."

Lindsey Meyer Foundation
donates "Pumpkin Run" funds

The Lindsey Meyer Memorial Foundation, based in Rutherford, has once again pledged part of the proceeds from its annual Pumpkin Run to NJSOCF. The event is held every October in Rutherford in memory of teenager Lindsey Meyer, a CF patient who passed away in 2001 after a long battle with the disease.

Lindsey attended St. Mary's High School, and each year, her family, friends and supporters turn out faithfully to raise funds in her memory.

The Lindsey Meyer Memorial Foundation was created after Lindsey's passing and the Pumpkin run was organized in 2002. Each year, the run begins and ends at Tryon Memorial Field in Rutherford and is followed by a free picnic, raffles, prizes and music at the Elk's Lodge.

"We are pleased to once again received support from the Foundation, said NJSOCF Executive Director Debra Sikkema. "We will use the donated funds to help provide direct assistance to cystic fibrosis families throughout New Jersey."

CF Awareness Foundation

"We feel very good about what we have accomplished since we started the CF Awareness Foundation in 2004," says Nick Lombardi of Monroe Township. "When our daughter, Caitlin, now 13, was diagnosed with cystic fibrosis in 1995, my wife Trish and I had a choice: either do something, or mope. We decided to do something."

That "something" included fundraising, which led to the family's relationship with the New Jersey State Organization of Cystic Fibrosis.

Proactive approach
Caitlin was only three months old when Nick and Trish got the early diagnosis.

"We decided we were going to become active in the cause and do something to help people with the disease," Nick says. "We started by doing fundraising under the umbrella of the Cystic Fibrosis Foundation."

In 2003, the Lombardi's decided to hold their own event, a golf outing that netted $12,000, with the proceeds going to the New Jersey chapter of the Foundation.

"But we still wanted to do more," Nick says. "In 2004, we started our own foundation. We held a second golf outing at the Forsgate County Club that October, raising another $12,000, with Accutest Labs as our co-sponsor. We also added another fundraiser, a wine tasting, also at the same country club. We raised another $12,000 from that event."

With about $24,000 in hand, Nick and Trish decided to expand the scope of their giving. "We spread the proceeds between the Cystic Fibrosis Foundation, the Boomer Esiason Foundation, and the New Jersey State Organization of Cystic Fibrosis," he said. "The Foundation is primarily geared towards research and NJSOCF does more with direct financial assistance, so we liked the balance."

Helping families
The CF Awareness Foundation also provides its own direct financial assistance to patients in need.

"Every year since we started, we have picked out two families served by the Robert Wood Johnson CF Care Center in New Brunswick," he says. "For example, we provide them with funds for food from the local supermarket and CVS gift cards. We tailor what we give to the needs of the individual families."

Positive outlook
Nick says he feels very good about what his foundation is accomplishing and is also positive about future prospects for CF patients.

"In the 13 years since Caitlin was born, we have seen enormous advances in the treatment of the disorder," he said. "There is new research and new medications being developed. A lot of the new drugs are in the final phase of testing and are designed to provide significant relief from pulmonary symptoms."

Nick, a medical educator, says he believes early diagnosis and new advances have added at least a decade of life expectancy for CF patients since his daughter was born in 1995.

"Caitlin is doing just great," he said. "She is an active kid, enjoying cross country skiing, basketball and playing the saxophone. She now has a brother, six year-old Timmy, who is free of CF. I believe she will lead a long life and we plan to do everything we can to help other CF patients do the same."

Things are looking better and better for women with CF who want to have children.

Recent scientific studies show that CF women have a fertility rate approaching women who do not have the disease. But these potential Moms are faced with complex decisions regarding whether or not to have children. Fortunately, the new studies provide valuable knowledge about the medical implications of pregnancy.

Much more is also known about the short-term medical outcome for the children.

Doctors say women with CF who become pregnant should anticipate having more medical care and possibly experiencing more complications during pregnancy than non-CF women. They also must take extra care to insure they gain the proper amount of weight by eating foods with a high nutritional value.

On the upside, having CF does not appear to have any impact on the long-term health and life expectancy of women with the disorder. Instead, researchers have found that CF patients who become pregnant and carry a child to term actually have a longer life span.

CF patient Debbie Ravettine of Mahwah went through two successful pregnancies and has two beautiful daughters, Bryeanne, now 17, and Rachel, 14.

"I would advise any CF patient thinking about having a baby to make sure they have a great support system and a doctor experienced in CF pregnancies," Debbie said.

Debbie said she had both and was also healthy when she became pregnant. "My doctor had told me I couldn't conceive, so when I became pregnant, it was a big surprise," she said. "During my pregnancy with Bryeanne, I gained 50 pounds and things were totally uneventful. With Rachel, things were a bit harder because I was dealing with an active toddler and constantly catching colds and viruses from her because she was enrolled in pre-school. I didn't gain nearly as much weight."

But both pregnancies resulted in healthy babies, both weighing in at more than seven pounds.

Debbie, now 48, said she recovered normally from the pregnancies, even breast feeding Bryeanne. "I am very lucky and each case is obviously individual," she said. "I would advise women to follow their doctor's guidance about their own risks of pregnancy and, it they decide to have a baby, be sure they obtain the finest medical care available and have family and friends to see them through."

CF CENTER SPECIALIZES IN ADULT CARE
The Cystic Fibrosis Center at Morristown Memorial Hospital

Pictured from left to right are the staff of the
Cystic Fibrosis Center at Morristown Memorial Hospital:

Paula Lomas, Nurse Coordinator; Stanley Fiel, M.D., Director;
Gail Grozalis, Dietician; and Elissa Cohen Engel, Social Worker.

Northern New Jersey CF adults have a wonderful resource available for the highest quality care and treatment: The Cystic Fibrosis Center at Morristown Memorial Hospital.

The center, which has a special focus on adults, is under the direction of Dr. Stanley Fiel, a pulmonologist and chairman of the hospital's department of medicine; and Paula Lomas, RN., BSN, nurse coordinator.

The center opened its doors in January of 2004 and now has a caseload of 50 adult CF patients.

"Our strength is in our multidisciplinary approach to the care of adult patients," said Ms. Lomas. "In addition to Dr. Fiel and myself, we have a social worker, nutritionist, respiratory therapist and can tap into other specialties, including an endocrinologist and a geneticist.

Ms. Lomas says that the center accepts many different insurance plans, including New Jersey and Pennsylvania Medical Assistance.

"Our patients love having everybody they need under one roof," she said. "Just between Dr. Fiel and myself, we have about 40 years of combined experience treating CF patients."

Since the center opened its doors, Ms. Lomas said that response has gone from "zero to 50 very quickly. We are one of the few centers in New Jersey that focuses on the needs of adult patients, a population that is growing as more patients lead longer lives."

Ms. Lomas said that a full 40% of registered CF patients in New Jersey are now over the age of 18. "As this population ages, the need for age appropriate care increases," she noted.

The center stands ready to provide state-of-the-art care using a multidisciplinary team that offers complete advice. "I urge adults that need the type of services we offer to call us for assistance," Ms. Lomas said. "CF adults need full-time specialized care and attention, just like pediatric patients. We would like them to know that we are here to help.

Adult CF patients who would like to know more about the center and its services can call Ms. Lomas at (973) 971-4103.

NJSOCF OVER THE YEARS

One Woman's Vision Helps Thousands

Sometimes all its takes is one determined person with a clear and positive vision to change things for the better.

Cystic fibrosis patients throughout New Jersey are fortunate to have that person,
NJSOCF founder Estelle Sikkema, and her vision: providing direct financial assistance to those in need.

Long before she started NJSOCF back in 1977, Estelle knew about the disorder on a personal level. She had a young relative who fought it with great courage and Estelle learned first hand just how devastating CF could be to families.

Moved by her experience, Estelle volunteered to work for the national Cystic Fibrosis Foundation shortly after it was founded in 1955. She later accepted a staff position there and eventually became its state director.

Pressing needs

But Estelle knew that something was still missing. She saw first hand that the pressing daily needs of patients were simply not being met by existing programs. Deciding that direct aid to patients was the key, she decided to enlist the help of a small group of volunteers and started an independent state-wide organization dedicated to providing patients with the things they needed to live as long and as well as possible while battling the disease.

The things that Estelle vowed to provide included help paying for prescription drugs, medical equipment and supplies, nutritional supplements, and extra nutritious foods. From the first, she was determined to cut through administrative "red tape" and offer hands on counseling and emotional support to patients and families in need.

The New Jersey State Organization of Cystic Fibrosis opened its doors in June of l977 in Paterson with a staff of two: Estelle and her dedicated assistant Rosemary Schroeder.

"It was difficult getting things off the ground," Estelle says. "But, with a great deal of hard work, determination and our strong belief in the need for our type of direct services, we toughed it out until the public became aware of us. Once they did, demand for our assistance began to grow."

Ms. Sikkema says that organizations that devote themselves to finding a cure and improving treatment for CF are needed, but that her organization fills a critical role that no one else is meeting.

"People need financial help to cope with this disease," she says. "You must deal with the realities of living with it on a day to day basis. When I founded NJSOCF, the life expectancy of a CF patient was about 12. Thankfully, their lives are now much longer but that means that their financial needs are even greater."

Estelle says that she believes that many working families just "fall between the cracks" of financial assistance. "Even a six figure income does not go far when you are dealing with CF, which is extremely expensive and can cost a family up to $100,000 a year," she says. "Many families have inadequate insurance and high co-pays. That is where we can step in to help provide the necessities."

Estelle is proud that her organization now administers a special state-funded program, "Pharmaceutical Services for Adults with Cystic Fibrosis." The program provides funds for prescription drugs, nutritional supplements, equipment and extra-nutritious foods to New Jersey residents age 18 and over with CF. The program also helps with insurance co-pays and deductibles.

Vision a reality

Seeing her original vision become a reality is a source of great satisfaction to Estelle.

"Since NJSOCF was founded, several major breakthroughs in research have been announced and lots of new drugs and treatments have been developed, but nothing has ever led to totally preventing or curing the disease. The lives of CF patients are now extended, making the services we provide more important than ever before. The fact that NJSOCF is here to provide them makes me very proud."

Estelle retired from her position as Executive Director of NJSOCF three years ago and her daughter, Debra Sikkema, now fills the post. Rosemary Schroeder is still on staff as Events Coordinator, along with administrative assistant Bernice DeMeritt, Darleen Maurer, Grant Administrator, and Sally Herrick, Computer Consultant. NJSOCF moved to new offices on Preakness Avenue, Totowa, in 1990.

"Looking back over the history of NJSOCF I am proud of the way it has grown and gained recognition," she says. "It is very satisfying to know I founded an organization that is able to reach out and help people in such a direct and immediate fashion. Over the past 29 years we have helped thousands of patients from every corner of New Jersey and, God willing, will go on to help thousands and thousands more."

NJSOCF and St. Joseph's Children's Hospital have joined forces to provide special services to cystic fibrosis patients. The hospital, located in Paterson, has a Cystic Fibrosis Center that provides comprehensive care for patients and families of all ages from Bergen, Passaic and Hudson Counties.

The Center is under the direction of Dr. Roberto V. Nachajon, chief of pediatric pulmonology at St. Joseph's Hospital. The Center coordinator is Kim Luciano, R.N., Pediatric Nurse Practitioner.

St. Joseph's will be calling on NJSOCF to provide emergency financial assistance for their CF patients and NJSOCF will use the hospital as a valuable resource for information and referrals.

Dr. Nachajon hailed the relationship as a "blessing" for his patients. "Many need this type of help," he said. "It's very difficult for them to meet their co-pays and drug expenses. Extra home care costs also mount up."

He added that financial help was critical because it has an impact on the outcome of the disease. "Economic hardship has a direct and negative effect," he said. "Missing treatments, prescriptions, and supplements can cut the quality of life as well as life-expectancy. The help that NJSOCF offers is essential to many patients and helps them to lead longer, healthier lives."

Ms. Luciano was also very positive about the new relationship.

"NJSOCF has been an excellent asset in providing special assistance to our patients," she said. "Transportation is often needed and NJSOCF will provide it. All NJSOCF services are easily and readily available."

Ms. Luciano added that NJSOCF also provides emotional support.

"As patients are living longer, we get more calls for assistance than ever before," she said. "Newborn screening has also added to our caseload. When you combine these factors with insurance and pharmacy cuts, higher co-pays, and the overall uncertainty of today's economy, you can see why so many patients need help. We are pleased and grateful to have this relationship with NJSOCF and look forward to helping to meet patients' many needs."