NJSOCF People

Susan Pizzo: A "Blessed" Life

The love and support of her husband and son, a desire to lead her life "just like anyone else," and a strong belief in God have enabled 45 year-old Susan Pizzo of Blackwood to maintain a positive attitude towards coping with cystic fibrosis.

"Fortunately, I have a fairly mild case and have never been terribly sick," she says. "But CF is something that has always been there in my life. I was diagnosed at birth and have received ongoing treatment but have never been hospitalized as a result of the disease."

Always active
Susan and her older sister Diane, who also had cystic fibrosis, grew up in a close-knit family in Philadelphia. "I always knew that I had to keep on top of the condition and have always been careful to take my antibiotics and eat a healthy, well-balanced diet," she said.

Susan attended South Philadelphia High School, graduated in 1979 and went to work at a local bank "feeling good."

"I was originally very interested in a career at the bank in loss prevention and security, but could never follow through with the special training because I had to take more than the normal amount of sick days due to occasional respiratory issues," she said.

"Despite that, I was always on the go and very busy, especially after I met and married my wonderful husband, Carmen in 1995, and became Mom to his son, Carmen, Jr. I got a double blessing."

Susan threw herself into work and family life, but at age 39, her doctor told her the time had come to slow down and start taking better care of herself.

Taking care
"At that point, I went to my boss at the bank and told her about my CF. She was very sympathetic but I said I didn't want a 'pity party.' She suggested that I cut back my hours and switch to duties as a teller."

Susan worked as a teller for a while and then the family decided to move to New Jersey. At that point, Susan decided the time had come to take it easy.

"Even though I absolutely hated the idea, I decided to apply for disability, first short term, then long. It turned out to be the right decision because my health has improved a lot and I feel so much better."

NJSOCF helps
Susan has been involved with the New Jersey State Organization of Cystic Fibrosis for about three years.

"The organization has helped our family so much," she said. "Thanks to their assistance with insurance co-pays, we can live comfortably. They also help with my food expenses. The stress they have taken from our lives is the answer to our prayers."
Susan first heard about NJSOCF and its programs of assistance from a social worker. "As soon as she described it, my eyes lit up," Susan says. "I signed up immediately and it has made such a difference in our lives."

Susan says that her faith in God, her husband and stepson, now 20 and involved in the ministry as a youth pastor in Lakeland, Florida, have sustained her over the years.

"I belong to a great church and have a wonderful, supportive family," she says. "I am surrounded by people that love and care for me and also draw strength from the Lord. I am truly blessed."

Kristin Frees - Miracle on 168th Street

"After double lung transplant surgery earlier this year, it feels like I never even had cystic fibrosis," says 24-year-old Kristin Frees of Linden. "The surgery was truly a miracle and my life has been given back to me."

Kristin was diagnosed with cystic fibrosis at the age of four and grew up in a large family, with four siblings and parents Robert and Carolyn.

"Cystic fibrosis didn't affect me that much when I was little," she says. "I was just annoyed that therapy cut into my play and activity time. But when I was in middle school I really started to feel the effects and my symptoms got worse when I got to high school."

By then, Kristin was on home and portable IV's, antibiotics, lung physical therapy, and oxygen but she had a lot of support from her family and kept a hopeful attitude.

She graduated from Linden High School and started college, but her battle with CF continued.

In 2006, St. Barnabas Medical Center in Livingston admitted and treated Kristin off and on for several weeks after Easter. Kristin's father, Robert, believed the time had come for his daughter to get a lung transplant and made an appointment at the famed transplant center at Columbia Presbyterian Medical Center in Manhattan.

"We had one appointment at the medical center and the doctors told us that Kristin was definitely a candidate for a lung transplant; it was just a matter of timing," her father says. "Her lung capacity was very low but they did not think she was at immediate risk so we were told to go home and monitor her very closely."

Only ten days later in June, Kristin woke her dad at 3 a.m. and told him she needed to go to the emergency room.

"My parents carried me to the car and took me back to St. Barnabas where I was re-admitted to the ICU. I don't remember much but my Dad tells me the staff there did a wonderful job."

Kristin's Dad took action from her bedside. "He was on the phone with Columbia Presbyterian Medical Center in New York, where I had been for the consultation. He told them I needed an immediate lung transplant," she says.

Mr. Frees' persistence paid off. Columbia Presbyterian finally sent an ambulance for Kristin and the very next day found a pair of lungs that were a match. "It was a miracle," Kristin says.

Kristin had double lung transplant surgery on June 19th. "I tell her that June 19th is now her second birthday, because it was the day she got a new life," her father says.

A new life
Kristin stayed in the hospital for another six weeks, taking medication and undergoing physical therapy. "I came home at the end of July," she says, "and was pretty much back to normal by September."

But Kristin now has a new definition of "normal" that has nothing to do with CF.

"It's been so long since I was able to do simple things like walk around, play with my nieces and nephews in the yard, or even read something out loud, that I had forgotten what it was like," she says. "Now my life has been given back to me."

Kristin plans to finish her education at Kean University, where she only has a few more courses left for a B.S. in psychology. "I may go on for a master's degree and become a counselor," she says. "After having been helped by so many, it's now my turn to help others."

Looking back over what happened, Kristin's father has a word of advice for other CF patients thinking about a lung transplant: "Don't wait too long."

"That's the most important thing," he says. "You need to make an appointment at a top-notch transplant center, get counseling and monitoring, and start planning well in advance. CF patients tend to have excellent outcomes from this kind of surgery. I say, go ahead, get the transplant and wait for the rest of science to catch up to you."

NJSOCF helps
Kristin continues to get prescription drug payment assistance and other services from NJSOCF's "Pharmaceutical Services for Adults with Cystic Fibrosis." She has been a participant in this program since she turned 18. The organization also stepped in earlier this year to help her family with emergency assistance to cover expenses related to the surgery.

"We share the ups and downs of living with CF on a personal level with many of our program participants," says NJSOCF Executive Director Debra Sikkema. "Kristin's story is extraordinary, and we are glad to able to help. We wish Kristin and her whole family all the best for a happy and healthy holiday, and many, many more."

Marty Rittenberg: It's "a labor of love."

Long-time NJSOCF board member Marty Rittenberg of Wayne describes his volunteer work as "a labor of love."

"I have been involved for about twelve years and think this is an organization with a unique and wonderful mission-providing direct financial assistance to those who need it most," he said.

Marty's awareness of the New Jersey State Organization of Cystic Fibrosis began with his son, Harris. "Even though he had CF, he lived life to the fullest," he says. "He was Senior Class President, a member of the Honor Society and was accepted to Columbia University before he passed on at the age of only 18, back in 1983."

Reflecting on the improvements in diagnosis and treatment for CF patients, Marty says he often wonders if that would have made a difference with his son. "Back then we went from doctor to doctor, not knowing what the problem was or what to do. Now things are so much different and better. Our daughter Mindy's two young children have been tested for CF and fortunately they are in the clear."

Marty joined our board after being contacted by NJSOCF founder Estelle Sikkema. "I couldn't refuse," he said. "NJSOCF is a unique organization, almost like a family. We have one event, our Fall Dinner and Fashion Show, which draws more than 400 people. That says it all.

Now NJSOCF Vice President and retired from a lifelong career as an educator on the public school and college level, Marty says he is totally committed to The New Jersey State Organization of Cystic Fibrosis: "The work they do is so necessary and the services they provide so badly needed, there is no way I am not going to continue to do my very best on their behalf."

Three good friends "stay the course" for Cystic Fibrosis

"All for one and one for all" could be the motto for three good friends from Lake Hiawatha who have been supporters of NJSOCF for almost twenty-five years.

Josephine Serritella, Carole Sanguino, and Sue Thorpe are all long-time neighbors, who became dedicated to the cystic fibrosis cause when Sue's young son, Stephen, was battling the disease in the late 1970's.

"We all had children in the same age range and our families all went through all of it with Sue, Stephen and the rest of the family," says Josephine. "We were all at home, the kids were young and we saw first-hand how tough it was for the Thorpes.

Carole agrees. "We saw how Stephen and his parents suffered," she says. "He fought the disease so hard and so very much wanted to be just like the other kids, but he couldn't. We had a pool and would spend lots of time helping him splash around and have a good time."

Sue says that she will never forget the support from her friends. "Stephen was old enough when he died at age nine, in 1982, to know that there was not a cure for cystic fibrosis. He very much wanted for someone to find one, so we all pitched in to do what we could to help others battling the disease."

Josephine says that NJSOCF founder Estelle Sikkema contacted the three friends to see if they wanted to help her organization, dedicated to helping CF families with medical and prescription expenses, insurance and nutritional supplements.

"We had first met Estelle when she was working with the Cystic Fibrosis Foundation. All of us liked the idea that she now wanted to provide direct help, even though we realize that the research part of things is important, too," said. Carol. "After seeing what Sue went through, we knew how badly families need financial assistance and other direct help."

The three friends agreed to pitch in to help Estelle and her organization and their support has been constant ever since.

"We have worked on a variety of special events for NJSOCF, but the Fall Dinner and Fashion Show has become our main focus for the past few years," says Sue. "We have gotten our grown children involved and all of us work hard to make sure the dinner is a big success every year."

Josephine says they make the dinner a joint effort and even though all three now have jobs, play an active role, especially with ticket sales and helping out with the raffle the night of the event."

All three agree that the NJSOCF mission is right on target.

"The day to day help they provide is so important," says Carol. "The adult program is very much needed because so many CF patients are living longer and do not have insurance coverage to help with expenses. NJSOCF provides them with a lifeline of support."

Josephine says she looks at her work with NJSOCF as a way of giving something back. "Working with NJSOCF has meant a lot to all of us. NJSOCF does wonderful work and maybe we will even see a cure some day. I hope I live to see that."

Sue says that, looking back, she wishes she had the kind of help NJSOCF now provides. "It's a hard, expensive struggle," she says. "Direct financial assistance can make all the difference to families. It's the practical help that is so badly needed. NJSOCF is there to offer it to families in need. They are simply the best."

Meet Cody and Tyler Anderson - Our New "Poster Boys"

Egg Harbor Township residents Tyler and Cody Anderson are handsome, happy youngsters who are very good students, enjoy playing sports and have a wide circle of friends and a loving family.

But nine-year old Tyler and seven-year-old Cody also have cystic fibrosis.

So, in addition to all of the traditional activities of youngsters their age, they must also cope with the day-to-day realities of living with the disorder.

"I am amazed at their positive, willing attitude towards coping with CF," says their Mom, Chandra. "They never give me any trouble with their treatment, pills, nutritional supplements, home IV's, physical therapy, or anything else. They understand how important the different therapies are and keep a positive attitude."

Cody was diagnosed with CF at age 15 months. Chandra then had Tyler, then 2 ½ tested, and the results also came back positive.

"Both boys had certain symptoms from an early age, including coughing and wheezing that just wouldn't go away," Chandra says. "Cody's symptoms led me to have him first checked out when he was only three months old, but the doctor told me that it was 'probably asthma' and that he would 'grow out of it.'"

But when the symptoms persisted, Chandra switched to a specialist who referred Cody to Children's Hospital for definitive tests and he and Tyler were finally diagnosed in 1999.

Chandra says that the diagnosis was "completely overwhelming. But from that day on, we have taken things one day at a time and focused on the practical matters of coping with cystic fibrosis."

Chandra says that Tyler "had a great run" for several years but she is now concerned that his growth rate has slowed.

"He now as a gastro tube for night feeding with a nutritional supplement and has been in and out of the hospital for the past year, but there are still no concrete answers for the slowdown in growth. Cody is still doing well and is on and off oral antibiotics."

Chandra says that both boys attend school full-time and are good students who enjoy their activities and their friends.

"Fortunately, they don't balk at anything they have to do related to CF and are now very involved with their own chest physical therapy, which takes 40 minutes, two times a day. We use a new vest system that allows for self-treatment, sometimes followed by manual clapping."

Chandra says that she and her husband, Mike, treat their sons like any other children their age.

"They are just such good sports about all of this that we don't want to do anything to make them feel that they are different from other youngsters. They have their baseball, karate, friends, and cousins who live right next door. The New Jersey State Organization of Cystic Fibrosis has been a big help, providing us with needed nutritional supplements as well as emotional support. We have chosen not to look too far down the road and just concentrate on living each day as it is given to us."

Giovanna Damiani
Dinner Chairman "Extraordinaire"

"It's like putting on a big wedding," said Fall Dinner and Fashion Show chairman Giovanna Damiani as she described the hugely successful event that she has guided for the past two years. "I bring in a lot of people and do a little bit of everything else, from planning table seating and making centerpieces to picking up raffle prizes. It's a lot of work, but I love doing it."

Giovanna got involved with NJSOCF more than 30 years ago. Her first child, a daughter was born with CF and passed away at the age of six months. Her second child, Mario Jr., also has the disorder, but it is a mild case and he is now 31.

Giovanni met NJSOCF founder Estelle Sikkema when she sought help with Mario and the two remained fast friends over the decades.

"Estelle was always there when I needed help and understanding," she says.

"All CF parents know how important it is to get emotional support and Estelle never failed. I have been fortunate with Mario, but with some kids, it's just heartbreaking. That's what keeps me involved. I am just here to help other families cope with cystic fibrosis. I also work other NJSOCF events, like the Mother's Day Tea, and plan to keep on helping to raise funds for as long as I am able."

David Berkenbush

Going strong at 45

David Berkenbush, a 45 year-old resident of Pequannock, was the very first patient enrolled in NJSOCF's state-funded program for adults.

David was not diagnosed with CF until he was 23 years old and spent the early years of his life struggling with constant colds, lung infections and tonsillitis, not knowing that he had the disorder.

"I was born in 1960 and did not get a definitive diagnosis
of CF until 1984," he said. "Looking back, it seems amazing that no doctor ever suspected it, even though my older brother was diagnosed in 1977. I was never tested. It just shows how far diagnosis and treatment have progressed since then."

David remembers a childhood and teen years spent on antibiotics while fighting one respiratory infection after another. "CF also had a very negative impact on my college years because I was always sick and coughing," he says. "I started out at Northwestern College in Iowa and transferred to Messiah College in Pennsylvania, where I eventually got my degree in fine arts."

David finally got his diagnosis after college when his Dad was dying of cancer. "My mother suggested that I go and get a sweat test," he said. "I tested positive and had to face up to having CF."

Ups and downs

By the time he was diagnosed, David had decided to pursue payroll accounting as a career but found that the going was not easy.

"I have been in the field for the last 20 years and have experienced a lot of ups and downs, including some layoffs. I attribute it to simple bad luck, bad timing, and an uneven economy. Fortunately, NJSOCF was always there to help me when the going got tough."

David enrolled in the adult program after being laid off from a job and received on and off assistance from NJSOCF throughout the 1990's.

"I was referred to NJSOCF by Morristown Memorial Hospital, where I was finally diagnosed with CF," he said. "At first I just got emotional support and information, but when they started up the adult program, I got help paying for prescriptions, nutritional supplements, and extra nutritious food."

Debbie Ravettine

AGAINST ALL ODDS

Debbie Ravettine, a 44 year-old suburban wife and mother of two, and a resident of Mahwah, has overcome tremendous odds in her life. She says that with faith, determination and the love and support of her family and friends she will continue to do so.

Debbie is one of a minority of CF patients to ever become a mother. She treasures the role and her lifestyle, which is typical for many women, but almost miraculous for her.

New direction

Floundering for a direction in life, Debbie dropped out of school, tried several different jobs and then met her husband, Peter, when she was 26. "We fell in love, but I didn't want to marry him, for obvious reasons. I knew that having CF made having children difficult and he wanted a family. But he convinced me to try and thank God, I did. Here I am now, 17 years married with not one, but two beautiful children."

Debbie says that at the time of her marriage, the odds against completing a pregnancy were very high. "I was told that I couldn't get pregnant. I was told that if I did I should have an abortion or I would die. Everything was very negative."

But within the first few years of marriage, Debbie was pregnant and had her first child, her "miracle baby," Bryeanne in 1991.

"I was amazed when I found out that I was expecting and even more amazed that I gained 50 lbs, going from 104 to 154 during an uneventful pregnancy," she says. Encouraged by their success, Debbie and Peter tried for another baby and had their second daughter, Rachael, three years later. The girls are now 14 and 11 and Debbie is happily immersed in home and school activities.

"My attitude is that God will not give me more than I can handle," she says. "I have a wonderful husband and two great children and I am going to do the very best I can."

Debbie says that she stays actively involved on several fronts and uses home treatment for cystic fibrosis as much as possible. "Home care, including IV's, has been great," she says. "It keeps me out of the hospital, even though I do have to check in from time to time for special lung-clearing procedures."

NJSOCF helps

Debbie relies on the NJSOCF's adult program to help with some of the costs related to her treatment. "I am currently on their adult program," she says. "We are currently spending about $100,000 a year on the home IV's, prescription medication, nutritional supplements, extra food for me, and other therapy. Even with insurance, it's just so expensive and the adult program really helps."

The prospect of insurance cutbacks or changes is always in the back of Debbie's mind. "Peter has a good job in the computer industry, but you just never know in today's health care world what is going to happen," she says. "NJSOCF is a great source of security. It's nice to know that they are there as a backup for us."

Debbie says that she is determined to continue to live her life to the fullest. "After all, I was supposed to have been long gone by now," she says. "I have a family and wonderful friends and I am going to live. I have beaten the odds and proved a lot of experts wrong. I will continue."

North Arlington's George McDermott is a man with a mission: raising awareness about cystic fibrosis, a disease he has battled his entire life.

George, a dispatcher for the North Arlington Police Department, has never let CF defeat him and would like to see more financial help made available to others who have the disease. He is now serving as the official adult spokesman for NJSOCF.

"The more people know about the disease the more they will be likely to contribute towards helping the many New Jersey residents who have it," he said. "There are a lot of major misconceptions about CF and it is very important to clear them up."

George has lived with CF his entire life. Diagnosed as a child, he grew up in New Jersey and graduated from Queen of Peace High School in North Arlington. He was lucky to have a "moderate" case of the disease and was active in sports and participated in many extra-curricular activities, including working with developmentally disabled children.

After graduating from high school, he became certified as an EMT. He later joined the local fire department and completed full training. He joined the North Arlington police department in 1997 and remains an active volunteer in his community and with NJSOCF.

"NJSOCF helped me by providing financial assistance through its adult program," he said. "I have always believed very strongly in their mission of providing direct financial assistance and want to do everything I can to raise awareness about the disease and let people know why patients so badly need help with their ongoing daily expenses."

George has helped raise awareness and funds over the years by mounting an annual softball tournament in honor of a friend, Brian Murphy. Currently he organizes a "Bowling for CF Awareness" event that will be held again this November 12 at the Bowl-O-Drome in North Arlington.

In addition to his job and his volunteer work, George still finds time to continue to help his community in several other areas. He is a soccer coach, teaches CPR, manages the web sites for the local ambulance and fire departments, and even does 'lunch duty' at the local school

And branching out into a brand new area - politics - he will run for a seat on the North Arlington town council this November.

His attitude is thoroughly positive and upbeat.

"I am simply not going to let CF defeat me," George said. "Despite having it, I've gotten everything in life I wanted so far. A wonderful wife, Tish, two great kids, Brianna and Cheyenne, a house, and even a swimming pool. I believe I am good at what I do and always want to make changes for the better and improve things. I realize that I have been fortunate and want to do everything I can to help others, especially those who need help coping with the daily challenges of living with CF."

More Photos of George McDermott

"Whenever I do something to help out the New Jersey State Organization of Cystic Fibrosis, the memory of my wonderful friend, Jill Leipzig, who was lost to cystic fibrosis 19 years ago at the age of only 23, is always with me," says volunteer Debbie DuHaime.

Debbie has been very active with the organization for many years, most recently chairing the first annual "Seashells for Cystic Fibrosis" fundraiser, which enlisted the support of more than 50 local beauty salons.

A long-time resident of Bloomingdale, she is well known in the New Jersey community, appearing on WABC (770), WBLS and New York One radio as morning traffic reporter.

Debbie first became acquainted with the NJSOCF through Jill.

"I saw first hand the devastating toll that Jill's battle with CF took on her family and friends and how much help and support they received from the New Jersey State Organization of Cystic Fibrosis," she says. "I vowed then and there that I would always do my best to help out other patients and families affected by this terrible disease. Jill suffered but she always smiled and had a sparkle in her eye, living life to the fullest."

Debbie has kept her pledge and maintained close ties with NJSOCF ever since and is in constant contact with Jill's mother Carol Leipzig, also an active volunteer for the organization.

She attends as many NJSOCF fundraisers as she can and also recruits her friends and family to join in.

"We all pull together for the golf tournament, bowling tournament and fall fashion show and dinner," she says. "I am blessed with fantastic family and friends who are very supportive and are ready and willing to help me out in raising funds for the organization."

Debbie took the lead in some successful fundraising "dating auctions" several years ago and has now turned her energies to a new venture, "Seashells for Cystic Fibrosis," which was held this past June.

Using her contacts as a representative for her father's business, Valentine Beauty Products, Debbie approached dozens of beauty salons in northern New Jersey and brought them in to the NJSOCF fundraising "fold."

The fundraiser involved salon owners asking their clients to write their names on a paper seashell available in the salon. Salons provided information on NJSOCF programs and displayed a colorful poster. The first-time event raised $5,000.

"I am very pleased with the results. For our first time, I think we did very well," Debbie says. "Some of the salons were very enthusiastic and really pushed for donations and we hope to expand the number of participants next year."

Debbie is a firm believer in the NJSOCF mission of direct financial assistance and emotional support for cystic fibrosis patients. "I have total respect for the organization and it's goals," she says. "I go way back with them and am thankful for the way they helped my friend, Jill. The link with both NJSOCF and Jill's wonderful mother, Carol, is very important to me and I will always keep them close."

Alan Barone

NJSOCF President Looks to the Future

NJSOCF's Board of Directors President Alan Barone says the organization is on the right track and poised to develop some new ways of bringing in funds to meet the needs of New Jersey's cystic fibrosis patients.

Mr. Barone has been Board President for the past two years, after spending many years as a volunteer and then a regular board member.

"I first became involved with the organization years ago through Anne and Tony LoSasso who were active NJSOCF volunteers and had two daughters with CF. I saw first-hand what a devastating disease cystic fibrosis can be."

Before Mr.Barone became a financial advisor he was able to help the organization through his previous business. "We sometimes used our delivery trucks to help move materials for different NJSOCF special events and I gradually became more and more involved with the organization," he says.

At the time, NJSOCF's Executive Director was Estelle Sikkema, who immediately spotted Mr. Barone's potential. "With her urging I got more and more involved, attending the different fundraisers and then began speaking at some of them. Finally, Estelle invited me to join the Board and I couldn't say no."

Shortly before she retired as Executive Director in 2002, Ms. Sikkema asked Mr. Barone to head the organization. "Once again, I couldn't refuse, and here I am," he said. "It's a great organization and I'm happy to help them maintain the outstanding level of services they provide."

Mr. Barone says that his plans for NJSOCF include finding ways of increasing its revenue stream. "We need some fresh fundraising ideas and some new events, hopefully with some type of corporate support. Things are on a sound footing, but more funds are needed to serve our patients and I am confident that we will be able to find ways of bringing them in."

Scott Jemison

Wants to help build a "home away from home" for transplant patients

Scott Jemison of Williamstown, New Jersey is a cystic fibrosis patient who has defied all the odds.

First diagnosed at the age of five, Scott, who is now 43, has gone on to complete his education, work in fast-food restaurant management, and start his own successful restaurant business, Buffalo Bill's Barbeque, located in Sicklerville.

Along the way, he has also achieved a Black Belt in the martial arts which he says "saved his life," had a double lung transplant, and now has a vision of helping to found a "home away from home" much like the Ronald McDonald House, for families of patients undergoing organ transplants.

Looking back over his life, Scott reflects on his ups, downs and triumphs over adversity.

"While a youngster, I suffered from the "boy in the bubble" syndrome and was beat up and teased by other kids," he recalls. "By the time I was a teenager, I had 'had it" with CF and the complicated and time-consuming treatment. Unfortunately, I turned to using drugs and alcohol to escape my problems, almost dying as result."

While he was in the hospital recovering from the damage he had done to himself, Scott met a nurse named Jeff who was involved in the martial arts, something Scott had always wanted to explore. "But I had always been told that if I got kicked in the chest and my lungs collapsed, I would die," he said. "My parents were always strictly opposed."

As things turned out, Scott found a way to get involved in martial arts by finding a non-contact program, which he joined. Over the years, he stayed with the discipline he loved, moving from Karate to Tai Kwan Do to Ju Jitsu and engaged in contact with no damage done. He eventually achieved a Black Belt.

While involved in the martial arts, Scott also changed other things about his life. "I stayed strictly away from drugs and alcohol and changed my diet to a nutritionally sound one, eating lots of fresh fruits and vegetables, and high-quality protein. I also drank lots of water. I know now that I was kind of ahead of my time because the CF diet recommended back then relied on lots of 'junk food' like cupcakes and Twinkies, to add extra calories. Now the diet doctors recommend is much like the one I started years ago."

Despite his focus on his health, Scott's lungs started to fail and he had a double lung transplant in 1997. "My surgeon at St. Christopher's knew about my dedication to the martial arts and was concerned about my getting kicked in the chest or having a broken rib puncture my lung, so they put a special steel plate in my chest to protect the new lungs, "Scott says. "This enabled me to stay with the martial arts that I love."

Aside from his interest in the martial arts, Scott also forged a successful career in restaurant management, starting out working at Roy Rogers and moving on to manage other fast food franchises in the South Jersey area. He loved the food industry and decided to open his own restaurant in 1995.

Buffalo Bills, which Scott operates with his partner Brian Biggs, features ribs, chicken, chicken wings, and Philly cheese steak sandwiches along with other items designed for take out. Scott manufactures a special line of seven different all natural, quality barbecue and cooking sauces that are used in the restaurant and are also available separately. He even publishes a newsletter!

"The restaurant has been successful and I would like to use that success to help others," he says. "I am now trying to find a way to market my line of sauces so that the money can be used to spearhead what I call a 'transplant house' for families."

Scott vouches for the quality of his sauces. "I use all-natural ingredients and no chemicals, no corn syrup, and no synthetic hot flavoring," he says. "I also provide recipes and will even custom-design them for customers."

Scott has made the rounds of local gourmet food shows and cooking contests and won several awards and blue ribbons.

Speaking about using his products to help found a transplant house, Scott says that there is a real need. "If I can find some way to use the proceeds from my products on a regional and national basis, it would be a start," he says. "My lung transplant saved my life and I want to help make the experience easier for other patients and their families."

Scott sums up his outlook on life. "At this point, I am very focused on maintaining my health but I also want to help others," he says." The transplant house is my dream. And as long as I surround myself with the things I love and enjoy I really believe I won't have the time to die. This is my philosophy of life and this is who I am."