News and Views

Cystic Fibrosis Poster Children

Michael and Julie Maisto of Little Egg Harbor

Seven year-old Michael is a normal second-grader who, although shy at first, likes making friends. "He enjoys playing with his Nintendo DS and competing with his older brother, Anthony," says his Mom, Beth. "His favorite color is yellow and he wants to be a policeman like his uncle. People who meet him see a normal, happy little boy."

Beth says it's still hard for the family to believe Michael and his younger sister Julie have cystic fibrosis. "Michael never complains about his medications or his physical therapy, which he started when he was diagnosed at three. But every birthday that comes, and goes, he tries to wish his CF away."

Michael's sister Julie is a four-year old "little live wire." "Even though she, too, has cystic fibrosis, there's nothing she thinks she can't do," says Beth. "She likes the color pink, Barbie, baby dolls and dressing up like Cinderella." Julie starts kindergarten next year.

Beth says CF treatments can be difficult for Julie because she is very active and likes to "keep on the go."

Michael and Julie, along with their big brother Anthony who does not have CF, do everything other children do.

"But we know their bodies work differently and sometimes we must watch them struggle to breathe," says Beth. "And hospital stays are the hardest. We try to comfort them as best we can, although we cannot imagine what they really feel."

"My husband Ron and I are so very grateful for the support of the organization and thank everyone who gives to this wonderful cause. In addition to the services they provide, sometimes just having someone who understands to talk to can make a big difference and is a tremendous help to families like ours.

"The Maistos came to us in 2006 when things became a little overwhelming for them," Executive Director Debra Sikkema said. "Beth and Ron are devoted parents who, like all young couples, are trying to raise their kids the best way they can. As we all know, in the current economic environment, things aren't easy for families and they are especially tough when you have special needs kids. CF children can tend to 'eat you out of house and home' because they need more nourishment than the average child. And it's essential that they get it from an early age. When you add in all the medications and equipment needed to treat CF, families are stretched to their limits."

Ms. Sikkema said her organization was happy to be able to help the Maistos with the basic necessities of living with CF. "They are a lovely couple who also give back to NJSOCF," she said. "This year Beth, along with Michael and Julie, hosted the Mother's Day Tea, a very important fundraiser for us. They know the assistance they get from NJSOCF can only be available for them and other families through the donated dollars that come from our generous supporters. We like to think of our organization, and the individuals and families we help, as one big family who work hand in hand to help one another."
Beth said that she would always be grateful for what NJSOCF has done for her family.

"They are a true Godsend and we hope you will lend your support, especially at this very special time of the year, by making a contribution to the Holiday Appeal."

Adult patient survey results
NJSOCF brings "hope" and services to many

As we reviewed the results of our most recent patient satisfaction survey, one word was used over and over - "hope."

Hope is essential to all CF patients, regardless of their age or condition. NJSOCF prides itself on our services, but also is gratified to see we also provide this other essential element. Here, in our own patients' words, are some of their comments. The comments are the response to one of the survey questions - "What does the adult program mean to you?"

Maintaining hope is vital to serving our patients and has a significance that goes far beyond the monetary value of the services we provide. We hope that our friends and supporters will keep this in mind whenever they volunteer or make a contribution to our cause. You are all helping to keep our patients' hopes alive.

August Golf Tournament was held in
Honor of Jim Egan

Our 24th annual golf tournament, held August 17, was dedicated to the memory of its former chairman, Jim Egan. Jim, who passed away in June, chaired the tournament for 24 years, taking it from a small event to a major fundraiser for NJSOCF.

Martin, John and Jim Egan, Jr.

The tournament, which drew more than 200 golfers, was held at the Ballyowen Golf Club and Wild Turkey Golf Course, both in Hamburg, and was followed by a post-tournament awards dinner at the Crystal Springs Country Club.

"Everyone who attended had wonderful things to say about Jim and we were especially happy that our very first cystic fibrosis 'poster child,' Matthew Cooper, was on hand because Matthew's battle with CF originally sparked Jim's involvement with our organization. Jim was a dear friend and is sadly missed."

Fall Dinner and Fashion Show

A stormy fall night didn't prevent our friends and supporters from turning out in force for our 31st Annual Fall Dinner and Fashion Show, held October 11 at the Westmount Country Club in West Paterson.

Mary Lou and Giovanna Damiani,
George McDermott and Rosemary Schroeder

More than 300 people attended the event, highlighted by a gourmet dinner, lots of raffle prizes, and an exciting Journey Productions fashion show, "Girls Just Wanna Have Fun." Baritone Greg Calderone was on hand, singing all of the old standards."

"It was great to see everyone gathered together once again for one of our most enjoyable special events," said NJSOCF Executive Director Debra Sikkema. "The rain couldn't keep us from raising funds to provide direct patient aid. I would like to offer my most sincere appreciation to all who attended."

First Annual Strike Out Cystic Fibrosis Fun(d) Raiser

"This year was great, but wait until 2008!" said event chairman Joe Cernera Jr. of Freehold, vowing that the November 4 bowling event he organized to raise funds for NJSOCF was "only the beginning."

Nicky, Joe, Andy and Joey Cernera III

"Even though we netted about $6,000 our first time out, I am determined to hold the event each year and raise substantially more every time out," he said. "My goal is $20,000."

This year's tournament was held on Sunday, November 4 at the Carolier Lanes in North Brunswick.

Forty-five bowlers participated in the fundraiser, which offered an array of raffle prizes donated by local merchants and Joe's business associates. "We also had corporate sponsorships totaling $2,800," he said. "Everyone was very generous."

Joe got the idea for the tournament after deciding he wanted to give something back to NJSOCF after the help given to his son, Joey, who was on the Adult Program.

"Joey was born with CF in 1979 when the average life expectancy was much shorter than it is now. Due to the advances in all types of therapy and medications, I am happy to say that Joey is now 28 years old and his future is just that - his future. It is not unusual for CF patients to live into middle age and beyond. By the time Joey reaches that point a cure may be found."

Joe used materials provided by NJSOCF to organize the November 4 tournament, along with his talents as a sales director, to attract participants and secure donations. "The highest individual donation was $210, raised by my youngest son, and we had a family that raised $500. But whatever the amount, we appreciate every single donation and contribution."

Joe said almost everyone he approached "really came through" and he is convinced that the tournament will grow much bigger next year. "I am a great salesman and I like to be Number One," he said. "This tournament is no exception. Just wait until you see the numbers from this next year."

Joe and his wife Christine love living in Freehold, which Joe calls a "very generous and close-knit community." The couple has three sons Joey, age 28; Andrew, 14; and Nicholas, 10.

Volunteers 'Spring' into Fashion to Raise Funds

This spring, two NJSOCF supporters came up with a new and appealing way to raise funds for our cause by focusing on fashions.

Kerry Culhane of West New York and Ruthann Erickson of Little Egg Harbor both enlisted the help of their friends to put together fashion-based events that generated thousands of dollars to help CF patients throughout the state.

"Model for a Cause"

Kerry's "Model for a Cause" event was held on Sunday March 25 at the West New York Middle School. Kerry and her friends recruited more than 40 models from children through adults to showcase an array of fashions with Hip-Hop, Black and White, Formal, and Preppy themes.

"My best friend has cystic fibrosis and has been involved with the New Jersey State Organization of Cystic Fibrosis for many years," Kerry says. "Our goal was to raise at least $6,000 for the organization, and we more than succeeded."

The funds were raised through the sale of tickets and fashion shots by local photographer Peter Cafasso. "Peter raised $1,000 from selling photo packages to the children's families and was a big help in meeting our fundraising goal," Kerry says. "We also got some donation checks."

Local boy scouts provided refreshments at the event and Olympic Tai Kwan Do of North Bergen put on a demonstration during the fashion show intermission.

"We are very happy that this event turned out so well," says Kerry. "The New Jersey State Organization of Cystic Fibrosis does great work and we are pleased to support them."

"Breath of Fresh Air"

Ruthann Erickson decided she wanted to help raise funds for NJSOCF as a way of working through her grief over the loss of her son Steven Rapp in 2005.

"I came up with the idea of holding a spring fashion show," she says. "This is my first fundraiser, so I worked very hard to make sure things turned out right."

All of the spring fashions came from Lin's Tanning and Boutique and were modeled by local teens and other woman at Creevy's Restaurant on Friday, April 27. Both are in Little Egg Harbor.

Fashions included everything from prom dresses to causal wear and a $12.00 ticket covered the cost of admission, including a buffet.

Ruthann says she received several donations of money and items in addition to selling the tickets. "The room at Creevy's, which is the Atlantic Golf Course clubhouse, holds 200 and was completely filled," she said. "We were overwhelmed by the outpouring of support from friends and the community, and raised more than $5,000 for a very worthy cause."

Ruthann says her son would have been proud.

"This was a very positive thing to do in his memory as well as a way of helping out the New Jersey State Organization of Cystic Fibrosis," she says. "He was on their adult program, and whatever he needed, he got, from food, vitamins, prescriptions, co-pays, even an air conditioner. He could not have made it without them and I am happy to help any way I can."

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."