Rare Breed Donation

By Theresa Edwards Makrush

A group of African-American men known as Rare Breed Motorcycle Club of Jacksonville has combined a passion for Harley-Davidson motorcycles with a desire to help people and communities. Through fundraising events like car washes, food sales and raffles, the members collect money to donate to local charities.

Last month, Rare Breed President John “TREY3000” Stephens, Treasurer Lovell Caldwell, and Business Manager Rafaell A. Harris visited the UF Health Proton Therapy Institute to make a generous gift of $250 to the pediatric program. The contribution adds to the more than $1,000 in Christmas gifts the group donated last December to make the holiday bright for children being treated at the Institute.

Stephens said he learned about the UF Health Proton Therapy Institute several years ago through his employer’s toy drive benefiting the pediatric program. After seeing the joy on the faces of children receiving presents at the holiday party, he knew he wanted to do more for the pediatric patients.

“We are grateful to be among the charities supported by the members of Rare Breed Motorcycle Club of Jacksonville,” said Lindsay Carter-Tidwell, director of development at UF Health Proton Therapy Institute. “Their generosity means children in our care will have fun activities to help them through their cancer journeys.”

Executive Director Message


StuartKlein.pngEach year our staff is invited to participate in a Remembrance Celebration to honor the patients who have impacted our lives. During the one hour service, the names of each of our patients who have passed away over the year are read aloud. This is followed by a time for staff to share their stories and remembrances. The idea was initially proposed four years ago by our Social Services Director. I have to admit, I was a bit hesitant at first as I didn’t know how the event would be received. The event has proven to be very cathartic and inspiring. It is a time for all of us to reflect on the important work we do and renew our commitment to serve our patients as best we can.


Stuart L. Klein

Executive Director

Two Proton Weddings Bring Joy, New Beginnings

The wedding of Bobbie and Dave

Love was in the air at the UF Health Proton Therapy Institute as two couples put their cancer diagnosis aside to start a new chapter as husband and wife. Patient David “Dave” Leek and his fiancée Bobbie Godden were the first to get married in the lobby of the UF Health Proton Therapy Institute on May 23. The event was streamed on Facebook Live. The following week patient Lindsey Morton and her fiancé Ben Jackson married May 31.

Dave, Bobbie and their two children traveled from England to Jacksonville for Leek to receive proton therapy for a tumor he has been dealing with for four years. In February 2014, Leek was diagnosed with a sacral chordoma, a rare form of cancer that arises in the spine, and had a surgery to remove it. Even though Leek had routine MRIs every six months, it wasn’t until October 2017 that his doctors noticed the tumor was back and had been growing for several years.

Dave underwent another surgery in January and his doctors recommended he follow it up with proton therapy at the UF Health Proton Therapy Institute to ensure the tumor site receives targeted radiation to eradicate the cancerous cells while sparing healthy tissue in this very sensitive area of the body. Leek began proton therapy on May 1 and is feeling confident about moving past his cancer ordeal to focus on the future with his wife and two children. “Until now, we’ve always seen marriage as a piece of paper. But cancer puts life in a whole new perspective. We are considering this wedding as a celebration of life and are looking toward the future,” said Dave. “We’ve stuck together through all of life’s hurdles over the past 13 years and decided that there’s no better place to begin our next journey than at the UF Health Proton Therapy Institute.”

As word spread among fellow patients and the Institute’s staff that the wedding was taking place, people were inspired to get involved. Social worker Stephanie Saman arranged for a UF Health chaplain to officiate the ceremony and secured the donation of a wedding dress. Patient Services Director Bradlee Robbert organized the preparations for the big day, including securing a musician and catering. Decorations were created by artists-in-residence Pamela Gardener and Barbara Fryefield. The caregiver of another patient heard about the plans and offered to make a bridal bouquet and hair accessories.

“We are so happy for the couple and are excited they chose to share their special day with us,” said Stuart Klein, executive director at the UF Health Proton Therapy Institute. “We not only focus on providing the best possible cancer treatment, we also want everyone who comes through our doors to feel like they’re a part of something bigger. We were thrilled to help plan and facilitate this special day on behalf of this amazing couple that is a part of our family.”

After hearing Dave and Bobbie’s plans to wed at the Institute, patient Lindsey Morton and her fiancé Ben Jackson decided to do the same thing and were married on May 31.

Lindsey is a childhood cancer survivor, having been treated when she was 2 years old. Thirty one years later, after experiencing intense pain during her pregnancy, routine screening detected sacral chordoma growing on her spine. This new diagnosis is likely a secondary cancer brought about by the initial treatment.

After having two surgeries to remove the tumor, Morton left her home and family in England to come to Jacksonville and receive proton therapy. Because protons can attack the tumor site directly and avoid exposure to surrounding healthy tissue, Morton is looking forward to a long, cancer-free future with her husband and their children, 5-year-old Lexi and 1-year-old Harper.

“We’ve been together for 10 years and engaged for 9 years. It’s been one of those things where we keep meaning to have the wedding but time keeps getting away,” said Morton. “I think it will be nice. It will be like closing an old door and opening a new one all on the same day.”

As is customary when a patient finishes treatment at the Institute, Morton will walk down the lobby stairs and close their wedding ceremony by ringing the large hanging chimes – signaling an end to one era and the beginning of another.

As with the first wedding, staff and fellow patients rallied around the couple with well-wishes and support. Members of the Jacksonville community embraced the couple, with vendors like videographer Adi Meco of AM Productions donating time to ensure that every moment of the family’s special day is captured.

“We are thrilled to be part of such a special occasion for another couple,” said Stuart Klein, executive director of UF Health Proton Therapy Institute. “At UF Health Proton Therapy Institute, we don’t just want to provide the best possible cancer treatment, we want to help our patients build a community and support each other. I can think of no better way to do that than to help Lindsey and Ben celebrate the next phase of their lives.”

While these are the first weddings, the Institute has some experience with celebrating marriage. In October 2014, the Institute hosted a wedding vow renewal for patient Mark Kelso and his wife Kerry who celebrated their second anniversary while he was on treatment.

Expansion Construction Tops Out

UF Health Proton Therapy Institute expansion

Attendees of the UF Health Proton Therapy Institute expansion topping out ceremony May 2 were invited to sign a plaque which was embedded in the last concrete placement. Topping out is an age-old tradition in the building trades to celebrate the completion of a significant phase of construction. In this case, it celebrates the last of 10 concrete pour sequences, totaling 4,400 tons.

“This is a significant milestone,” said Ryan Snow, project manager for Gilbane Building Company. “The team worked hard to get to this point. We are excited to deliver this project and know that it will serve the community and offer additional treatment for patients battling cancer.”

The expansion will house a new single room proton therapy system, adding a fourth gantry and a cyclotron. The facility currently has three gantries and a fixed beam room for patient treatments and a cyclotron that generates and accelerates the protons used in treatment. Once completed, the facility will have five treatment rooms, two cyclotrons and 25 percent more capacity for patients.

The ceremony was attended by UF Health Proton Therapy Institute physicians and staff, University of Florida Planning, Design and Construction staff, as well as the trades, design team members and engineers who work for Gilbane Building Company.

Mother’s Day donation honors moms of kids who have cancer

The Believe Foundation

Kris and Tabitha Parson of Jacksonville have turned their daughter’s life-threatening cancer diagnosis into a mission to support families who are facing similar circumstances. Carolina Parson was seven years old when she was treated for a brain tumor in 2014, and today she is thriving. The Believe Foundation, started by the Parsons, is in its fourth year of giving, and just before Mother’s Day, they delivered gifts for the moms of children currently being treated at the UF Health Proton Therapy Institute.

The Parsons said they noticed while Carolina was on treatment that many of the moms at the Proton Therapy Institute had relocated to Jacksonville temporarily from other states or even other countries. They were inspired to honor mothers who often carry the majority of the caregiving responsibilities for both the seriously ill and healthy children in their families.

The Believe Foundation collected donations to provide an evening out for each of the 30 families currently on treatment at the Institute. Gift bags were delivered containing gift cards to restaurants and the movies along with a flower for each mom. The foundation also dropped off thousands of character bandages they had collected in a bandage drive for the pediatric program.

“We want families to know they are not alone,” said Tabitha Parson. “There is a community of people in the childhood cancer world here to support you.”


Executive Director Message


StuartKlein.pngPart of our mission is clinical research to discover the full potential of proton therapy in the fight against cancer. In our first decade, our research has made significant contributions to the medical community’s understanding of proton therapy patient outcomes. With more than 150 published journal articles, we have reported long-term prostate cancer outcomes, pediatric brain tumor outcomes, Hodgkin lymphoma outcomes and more than a dozen other disease sites. Last month, Medical Director Nancy P. Mendenhall, MD, was named Clinical Science Researcher of the Year by the University of Florida. We congratulate her on receiving this recognition and are proud to support her quest to uncover more about what protons can do to heal.


Stuart L. Klein

Executive Director

Medical Director Nancy P. Mendenhall, MD, Named University of Florida 2018 Clinical Science Researcher of the Year

Medical Director Nancy P. Mendenhall, MD
Nancy P. Mendenhall, MD, receives award from Michael Good, MD, dean of the UF College of Medicine.

Nancy P. Mendenhall, MD, has been named the 2018 Clinical Science Researcher of the Year by the University of Florida College of Medicine in Gainesville. The recognition comes, in part, for her recent research success in securing an $11.9 million grant for a national prostate cancer study comparing proton therapy to standard radiation treatment.

Each year, the college presents the award to a faculty member for outstanding achievement, productivity and research discovery. Mendenhall is a professor and associate chair of the UF Department of Radiation Oncology. As the medical director of the UF Health Proton Therapy Institute in Jacksonville, she leads the clinical care and research program for the advanced form of radiation treatment – proton therapy. The Clinical Science Research Award is given for research having a close connection with clinical medicine that has a significant impact on the delivery of patient care.

Funded by the Patient-Centered Outcomes Research Institute, the prostate cancer study will enroll 3,000 patients at 42 treatment centers across the United States; half will be treated with standard radiation therapy and half will be treated with proton therapy. The study will collect information for five years on patient-reported quality of life, physician-reported and patient-reported side effects and prostate cancer recurrence. Some participants receiving proton therapy will have the option to be randomly assigned to receive eight weeks of treatment at a lower intensity or four weeks at a higher intensity, to determine which regimen has a greater impact on cure rates and side effects.

Prostate cancer is the most common nonskin-cancer afflicting men in the United States, according to the American Cancer Society. It is estimated that 160,000 new cases of prostate cancer are diagnosed each year.

Since opening in 2006 under Mendenhall’s leadership, the UF Health Proton Therapy Institute has conducted dozens of clinical trials to treat more than 20 types of cancer. She and her team of clinical researchers have published over 150 articles in medical journals that report on the patient outcomes, treatment techniques and efficacy of proton therapy. She was instrumental in the development and launch of the first peer-reviewed medical journal dedicated to basic and clinical research in particle therapy – The International Journal of Particle Therapy. It is the official journal of the Particle Therapy Cooperative Group, an international organization for those interested in proton, light ion and heavy charged particle radiotherapy.

Save the Date: The First Proton Wedding

Prince Harry and Meghan Markle’s wedding isn’t the only one to make history this month. Mark your calendars to witness the first wedding to take place at the UF Health Proton Therapy Institute. Scheduled to be married are patient David “Dave” Leek and his fiancée Bobbie Godden.

Attend the wedding on Facebook LiveWatch the ceremony via livestream on Facebook Wednesday, May 23 at 11:30 a.m., or plan to join the happy couple in the main lobby for the celebration and reception immediately following at the weekly patient luncheon.

Dave and Bobbie have been a couple for nearly 13 years and, until now, they’ve always seen marriage as a piece of paper, said Dave. “We’ve been through thick and thin. We’ve stuck together through everything,” he said. Having traveled from England to Jacksonville to receive proton therapy for a tumor that he has been dealing with for four years has given the couple a new perspective on getting married. “It’s like we’re closing one door. We’re starting a whole new chapter,” said Dave.

While it is the first wedding, the Institute has some experience with celebrating marriage. In October 2014 the Institute hosted a wedding vow renewal for patient Mark Kelso and his wife Kerry who celebrated their second anniversary while he was on treatment.

Specialized Care for Brain Tumors

When it comes to treating rare and challenging brain tumors or neurologic disorders, patients are often referred to the UF Health Proton Therapy Institute and UF Health Jacksonville’s Skull Base Center. Here, a team of highly trained and experienced specialists collaborate to treat patients. The combination of advanced technology and doctors who are surgeons, radiation oncologists, medical oncologists and radiologists who have specific training in the brain and central nervous system makes the center a unique medical resource in the region. Ronny Rotondo, MD, CM, FRCPC, who directs the proton therapy brain tumor program, and Daryoush Tavanaiepour, MD, who directs the Skull Base Center, recently sat down for an interview about skull base tumors.



Proton Therapy Nurses Inspire, Innovate and Influence

May 6-12 is National Nurses Week, and the UF Health Proton Therapy Institute has a team of over 20 nurses who serve as case managers, nurse practitioners and researchers. Gail Sarto, RN, BSN, OCN, directs the adult nursing team and Amy Sapp, RN, directs the pediatric nursing team.

According to Ms. Sarto, patient care begins with a holistic approach. Each patient’s treatment is individualized, and a customized plan begins even before the first appointment when the nurse case manager is in touch to gather information. “This makes it possible for the first visit with the medical team to be as comprehensive as possible and for the patient to feel like we know them as soon as they arrive,” she said. In order for the most appropriate treatment plan to be developed, sometimes patients need testing to assure the cancer is properly staged, and nurses assist with testing.

The nurse case manager follows the patient through treatment and provides relief for symptoms and emotional support. “Having this new diagnosis of cancer is challenging, and frequently patients and their families require a lot of assistance with understanding the disease process and getting needed support,” said Ms. Sarto. “We work closely with our social workers to provide patients emotional and physical support. We also work closely with the billing department to assist with insurance issues that require clinical input.”

As patients transition to survivorship following treatment, the nurse case manager provides ongoing support to patients and families. With many patients who live outside of Jacksonville, coordination of care following treatment requires significant resources and support from the proton therapy nurses. “In survivorship, patients may need referrals or interventions. We work with the patient and their local resources to assure the patient’s needs are met,” said Ms. Sarto.

Clinical research is a unique focus of the Institute and nurse case managers along with research nurses are essential in educating patients about clinical trials they may be eligible to participate in as well as gathering data about the treatments’ effects. “Our goal is to provide the best quality of care that is research based,” she said.

The Institute’s nursing philosophy starts with respect for each individual, regardless of background, and includes being a partner with the patient in their care. Ms. Sarto said, “Being part of the patient’s care team is a special privilege.”


About This Newsletter

The Precision Newsletter is an electronic-only publication that is distributed by email. Each issue is sent monthly to patients, alumni patients and friends of the University of Florida Health Proton Therapy Institute. As the official newsletter of the Institute, the content is compiled and prepared by our communications representative and approved by the editor Stuart Klein, executive director of UF Health Proton Therapy Institute. Special bulletin newsletters may occasionally be prepared when timely topics and new developments in proton therapy occur. If you would like to send a Letter to the Editor, please click here.


Keep In Touch

It is easy to stay in touch with us online at floridaproton.org . Look at the top right corner of the homepage for Facebook , Twitter and YouTube icons, click and join us in the social media conversation. Also on the right side of the homepage there is a button for VTOC Patient Portal . Click here to open your secure account, view your records, complete clinical trial questionnaires and communicate with your nurse case manager.


Knowing how you are feeling during and after treatment is essential to providing you the best care possible and contributes to the care of future patients.