Natasha Anne Gaziano

Cian Griffin is a funny and energetic 5-year old boy, living with cystic fibrosis. He loves playing sports, having fun, and making people laugh. As a result of cystic fibrosis, Cian's daily caloric intake must be many times that of an unaffected 5-year old boy. In order to boost his intake of calories, Cian's doctors prescribed tube feed formula, which he must receive in addition to his normal high calorie diet. Unfortunately, because he and other CF patients are capable of eating orally, insurance typically will not provide coverage for the "supplementary" formulas. Cian's family struggles to afford the expensive tube feed formulas that must be paid for entirely out-of-pocket.

The Foundation has recently helped Cian, and several other CF patients like him, by providing a grant to purchase tube feed formula. Cian and his family were overjoyed to receive the assistance and expressed their overwhelming gratitude. The Foundation also assisted the Griffin family in visiting Disney World, an experience that Cian will cherish for his lifetime.

Katie Kendall is a 17-year old, teenage girl affected by cystic fibrosis. Teenagers with cystic fibrosis, such as Katie, are greatly encouraged by their doctors to vigorously exercise on a

very regular basis. In Florida, however, with paralyzing heat and humidity throughout most of the year, the exercise options can be limited for CF patients.

The new wave of physically interactive video games and entertainment consoles, such as the Nintendo Wii Fit and Xbox Kinect, have been welcomed by the cystic fibrosis community as an accessible means to bring this necessary exercise indoors. Patient compliance with an exercise regimen is increased due to the enjoyment of video gaming. Katie's doctor at Shands Hospital at the University of Florida actually wrote a prescription for her to begin working with the Wii Fit system.

The Foundation was able to award Katie with a Wii Fit system, as insurance would not cover the treatment, and Katie's family was unable to afford the necessary hardware. Katie now works out on the Wii system for at least twenty minutes daily in order to remain active and disrupt the effects of cystic fibrosis on her lungs.

Cystic Fibrosis patients seen at Shands Hospital at University of Florida often travel significant distances to attend checkups and receive care. With the recent increases in the cost of gasoline, it has become financially impossible for some families to afford the overwhelming cost of the long trips for appointments and hospitalizations. Once families make it to the Hospital for in-patient stays, there is then the increased costs of eating every meal at a restaurant.

To help these families out, the Foundation has been distributing prepaid gas cards and gift cards to popular

and convenient restaurants. We are also in the process of providing parking garage passes and cafeteria vouchers for the families staying with their children at the hospital. Your donations allow us to help more and more families every month, at a time when the need for this assistance is greater than ever.

In the past few months, the Foundation has assisted cystic fibrosis patients at Orlando's Nemours Childrens' Clinic with necessary supplies, such as vitamins, tube feed formulas, and nebulizer cleaning solutions. Again, insurance coverage typically excludes these expensive supplies, and families who are already pressed financially cannot afford them. We will continue to be working with the social workers at Nemours to assist with providing much needed relief for these families.

Stefan Kravljanac is a 16 year old pediatric pulmonary patient at Shands at UF, who has been affected severely by cystic fibrosis. Social work coordinator Susan Horky nominated Stefan

for a grant from NAGF for a MacBook laptop computer to assist him in his education and recreation while hospitalized. Susan describes Stefan’s good-hearted nature, and positive attitude in dealing with the exteme challenges presented to him by his condition, which requires that he receive a triple-organ transplant of lungs, kidneys and liver. (Susan is shown at right with Stefan.) Dr. Mary Wagner of the Department of Pediatrics supported Susan’s nomination and recommended that NAGF grant Stefan’s application.

On Stefan’s birthday, NAGF Director Rina Gaziano Karle surprised Stefan by presenting him with a brand-new MacBook laptop. The computer will allow Stefan to keep up to date on his schoolwork and develop his creativity for digital arts, while entertaining himself with movies and games.

The downturn in our economy coupled with the numerous additional costs of caring for a child with a chronic disease has left many CF families financially struggling and making choices between medical care and basic needs. Some of the services that the foundation was able to provide this year directly to financially stretched CF patients and their families include:

David Brown is a 14 year old boy from Fort White, Florida, who has cystic fibrosis. Recently the Foundation received a request from him for a special trip to Universal Studios for him and his family. He said that he never gets to go to fun places because of his family’s financial limitations and because it’s hard to plan a trip around his very frequent hospitalizations and treatments. David is not a candidate for a lung transplant and is frequently hospitalized, as often as twice a month, which requires him to be home-schooled.

He and his family are very involved in fundraising to benefit the CF community. Each year at Halloween, his family hosts a popular Haunted House attraction on their property in North Central Florida, and his father organizes an annual car show, with all the proceeds benefiting the CF Foundation.

of Adventure, two nights at Homewood Suites Hotel and two Speed-passes, so that David and his brother wouldn’t have to wait in the long lines at the rides (like his favorite, The Simpsons). David and his family had an awesome time, and we are very grateful to the Homewood Suites for providing us with a corporate rate discount on the rooms. David sends his thanks to all of the donors throughout the year who made this possible.

Mike Skoyec, 28, has been a role model for others in the Cystic Fibrosis community for all of his life. He has served as a camp counselor and mentor for dozens of children over the past several years at Sunny Shores Sea Camp, an annual week-long camp for children with CF. After a long struggle with CF, Mike finally received a double lung transplant at the University of Florida on July 4, 2008. For Mike, the best part about having new lungs is being able to enjoy the small things such as deep breathing and being able to do “normal” day to day activities that others take for granted.

Mike is a college student at Manatee Community College and continues to volunteer in the CF community. He recently requested financial assistance from the Foundation for new running shoes. His request was granted, and he continues to run for those with CF who can’t run for themselves. Recently Michael completed the Sarasota Half Marathon in 2 hours, 38 minutes, and the ING Miami Half Marathon (twice), The Sarasota Bridge run, Jingle Jog 5K, Manatee 5 Miler, and the One Breath at a Time 5K in Tampa, which ended up being his personal best time of 25:39.

Mike is a very down to earth guy who is truly a CF success story. He is living his dream and winning the fight against cystic

fibrosis one day at a time. Mike is very modest and humble, when I asked him for something interesting about himself, I expected him to tell me something about his brilliant painting and artistry, the struggles of going to college and being occasionally hospitalized, or about being interviewed by the Bradenton Newspaper, but he simply replied that his favorite movie is Goonies and his favorite cookies are the Girl Scout Samoans. Mike runs with Zoot shoes for his 5K races, and Asics for his half-marathons. Way to go, Mike!

Recently, The Natasha Anne Gaziano Foundation donated a Nintendo Wii Fit system to the Streetlight program at Shands Hospital. Shands treats a large number of patients with CF, many of whom are adolescents. While the hospital provides the state-of-the-art medical care needed to treat the disease, the Streetlight program is a non-profit group committed to meeting the non-medical needs of adolescents with CF through consistent and daily companionship with a team of trained college students, who are mostly pre-med majors. The entire Streetlight team is made up of 40 - 50 young adult and college-age volunteers from the University of Florida, Santa Fe Community College, and the Gainesville community, as well as professional associate members including Maureen Novak, MD; Dawn Grinenko, MD; Kristin Joos, PhD; John Reiss, PhD; Caprice Knapp, PhD; and John Graham-Pole, M.D. Members of the Streetlight team work closely with John Reiss, PhD, who is a research author on the particular transitional needs of the adolescent patient moving to adult care. Sociology Professor Kristin Joos, PhD, provides valuable resources to young adults who often feel derailed from college and career plans due to their illness. The Streetlight Team will utilize the Wii Fit games to provide physically-active entertainment to the CF patients.

Rina Gaziano Karle, trustee, and Board Member Lauren Arce, BSN, presented the Wii Fit to the Streetlight program in Gainesville, Florida. We were so impressed by the level of organization of this group led by Rebecca Brown. The level of commitment of the volunteers to meeting the unique psycho-social-spiritual needs of the adolescent is outstanding, and failing to address these needs can lead to intensified pain and a poorer response to medical treatment.

Exercise is imperative to the well-being of a CF patient. While in the hospital, exercise is frequently provided as part of the treatment protocol. Many teenagers are not fond of the exercise options available to them while in the hospital; riding a stationary bike or walking on a tread mill being the most common. While the Wii Fit may not be a complete substitute for the prescribed exercises, it does provide a fun outlet for CF patients and gives them an additional form of exercise and activity.

CF clinics and centers across the country such as Ohio State University Medical Center and Children’s Hospital at Vanderbilt in Nashville, Tenn., are beginning to use the Wii Fit system on pediatric cystic fibrosis patients. Several clinical studies are presently underway seeking to scientifically quantify the benefits of the Wii Fit.
The Wii Fit focuses on aerobics, yoga, balance games, strength training and sports. The Foundation provided all of the equipment so that a variety of games can be played, such as baseball, tennis and golf. The variety of activities and difficulty levels that the Wii Fit offers accommodates the diverse interests and limitations of adolescent CF patients.

Encouraging exercise in the CF teenage population is potentially challenging to physicians and health care workers. The Streetlight volunteers take the teenage patients under their wing and encourage healthy exercise habits in addition to friendship. This kind of influence and example is invaluable in this population. Natasha was always committed to exercise as a form of airway clearance and served as a mentor to other CF patients. What a better way to honor her than to give a tool that will inspire others to build a stronger body, foster a friendship, and provide a fun outlet?

Lane Holmes is a 10-year old boy with Cystic Fibrosis. Lane was referred to NAGF by Cindy Capen, MSN, RN, his CF coordinator at Shands Hospital at the University of Florida. Cindy describes him as being very well-mannered and compliant with all of his doctors’ orders. Compliance was always of the utmost importance to Natasha and she made sure her doctors’ orders were followed to the letter. The Foundation seeks to help those who also help themselves and Lane is a shining example of this.

In Lane’s Grant Application, he stated that he was in need of laptop for his hospitalizations. Lane is hospitalized for CF exacerbations, which can last over two weeks at a time. Having a laptop computer while at the hospital will allow him to keep up with his school work, watch DVDs and explore some of his favorite topics, such as The Solar System, science, and history.

Pictured above is Lane looking at his computer for the first time with Rina Gaziano-Karle, Foundation trustee, and Cindy Capen, Pediatric Pulmonary Nurse Coordinator at University of Florida Health Science Center.

During hospitalizations a laptop computer is a valuable tool for a child with CF to have, not only for educational purposes, but also for entertainment, such as video games and movies. Lane can receive missed assignments from school on his computer and stay in contact with his teachers as well as his friends and family. Lane is a good student and a smart boy. He, along with his mother, Tammy are very grateful for this gift. Lane’s spirit, kindness toward others and big smile are all very reminiscent of Natasha at his age. He has a sincere heart and a charismatic personality that makes him a such a loveable kid.

Lane recently wrote an essay for school describing Cystic Fibrosis and his personal experience with the disease. Now that Lane has a laptop computer, he looks forward to continuing to write while in the hospital and at home. This Grant gave him the freedom that is needed to pursue a normal life while battling his disease. Lane was surprised with his computer on May 18, 2009, at his monthly clinic appointment.

Lane and Cindy enjoy a laugh as they both poke fun at each other.

Sarah Tanner, age 19, from Christmas, Florida has cystic fibrosis. On August 1st, she received a “gift of life,” a double lung transplant, at Shands Hospital in Gainesville, Florida. While in the hospital she was surprised with an award from the Natasha Anne Gaziano Foundation. A pink laptop computer and a Vera Bradley computer case was delivered to her bedside.

In Sarah Tanner’s proposal to the Natasha Anne Gaziano Foundation she asked for a laptop computer that would help her in the following ways:

• Without leaving her home and compromising her immune system, she could use the laptop for online coursework necessary to complete the requirements for a high school diploma.
• Stay connected with other CFers world wide to talk about cystic fibrosis related issues including lung transplants and organ donation awareness.

Sarah was a special friend to Natasha Gaziano. Sarah wrote “I met Natasha when I was nine years old and my doctors wanted me to have a port placed but I was scared. Natasha came as a cystic fibrosis peer mentor to talk to me about it. She said it was one of the best things she had done. So I trusted her. And boy was she right! We stayed friends after that. My family and I prayed for Natasha often. I always looked forward to her visits and updates on how she was doing. It gave me hope to know if she could do it so could I. I also enjoyed doing Pilates together. I never got to tell her that I consider her one of my best friends and that she was like an older sister to me. She also helped me with questions about transplant. She told me the hardest thing about all of it was making the decision to have it done. She was right. I just wish she was here to see me get mine.”