Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease affecting the nerve cells in the brain and spinal cord. The disease causes motor neurons to slowly degenerate, which causes the control of muscle movement and the brain’s ability to initiate that movement to be lost. This causes ALS patients to eventually lose the ability to speak, swallow, move, and even breathe.

The average life expectancy of individuals suffering from ALS is two to five years. However, consistent treatment and support from at an ALS clinic – with a multidisciplinary team that can provide the newest treatments, therapies and access to clinical trials – are proven to help slow the disease’s progression.

“ALS has different variants; some patients will have longer survival rates than others,” said Tuan Vu, MD, professor in the Department of Neurology in the USF Health Morsani College of Medicine and director of the USF Health ALS Clinic. “However, through supportive care, patients do live longer and there are studies showing that ALS clinics do prolong a patient’s life.”

The team at the USF Health ALS Clinic includes social workers, dietitians, and physical, speech, and respiratory therapists, as well as neurologists, nurse practitioners and primary care physicians. By bringing such a range of disciplines and experts together, the clinic can provide treatment all in one location at individual appointments, so patients do not have to make multiple appointments to see each provider. After each appointment, the team meets to discuss the patient’s current situation and coordinates next steps in care.

“Our meetings result in a much more seamless level of care that we would not be able to achieve otherwise,” Dr. Vu said. “As a team, the goal is to improve the quality of life of the patient and lessen the burden of the disease.”

Tina Orr is a patient at the USF Health ALS Clinic who has lived with ALS for three years.

Tina Orr visits the USF Health ALS Clinic.

“Here, they do not look at you as a number; they look at you as who you really are,” she said. “They will help you in any way possible. To have my voice, to be able to eat what I want, and be able to spend time with my family…They have made that possible for me.”

And Gina Rathbun was diagnosed with ALS in 2009 and has lived with the disease for more than 14 years.

David Rathbun and Gina Rathbun.

“All of these wonderful providers have helped us so much in adapting our life to live with this disease,” said David Rathbun, Gina’s husband. “Every time we go, we learn about what works and what doesn’t work. It’s been a really wonderful experience and incredibly helpful. Gina has been an inspiration to me and everyone around her.”

Currently, there is no cure for ALS. However, there are multiple efforts to produce effective treatment plans for patients. Recently, the U.S. Food and Drug Administration (FDA) approved Rilutek®, the first drug that has reliably extended the life expectancy of people with ALS. Despite this, the drug will not strengthen or restore patients’ strength. It is one of many new medications on the horizon that may help ease the burden for those facing ALS.

”Our hope is that when patients think they may have the condition, they reach out directly to our clinic,” Dr. Vu said. “We do make a concerted effort to reach back out to these patients as quickly as we can. The sooner we can implement treatment and involve patients in clinical trials that help slow down the disease the better they will be.”

For more information about the USF Health ALS Clinic and scheduling an appointment, call the Neurology scheduling line at 813-396-9478.

For more information on making a donation to the USF ALS Center please contact Jennifer Kuenning at 813-396-2523

Story and video by Ryan Rossy, USF Health Communications and Marketing

When a USF Health faculty member publishes a book, some 30,000 people throughout the Tampa Bay area hear about it.

That’s because Gina Rathbun, director of Physician and Community Relations for the USF Physicians Group, has built a book program that includes a steadily growing email list for sharing the news about our published faculty. The robust program also provides an ongoing collection of texts for the Shimberg Health Sciences Library, thanks to generous donations from the faculty authors.

Rathbun has promoted more than 70 titles since starting the program in 2011 – this month marks the fourth anniversary of the program. The effort is a win/win/win/win, she said.

“It helps the faculty promote their books and it helps the library archive the work of our faculty,” Rathbun said. “It also lets patients know we have many knowledgeable physicians who really know their specialty. Published work helps give them added credence. If you’re a patient, then wow! A book says this doctor has published in their field of work. I come from a strong corporate business background, so I know this sort of effort can help build patient volume, as well.”

The fourth “win” is for the students, she said.

“I’ve received emails from students saying they were so glad to have access to these resources at our Shimberg Library and that the texts really helped them,” she said.

The authors agree that the impact on students is gratifying.

“When you edit a book you not only create an opportunity for writing but you also mentor the young students and faculty to crystalize their ideas and help them grow in their career,” said Yashwant Pathak, MPharm, EMBA, PhD, professor and associate dean for Faculty Affairs in the USF College of Pharmacy and author of several books in Rathbun’s program.

Starting the book program was a natural effort; Rathbun is an author herself; she wrote Silenced by a Mission Statement: An Organization’s Cloak of Ambiguity, a paper published for the field of organizational communications while she was in graduate school. Rathbun holds a master’s degree in health and organizational communication, a bachelor’s degree in communication (both from USF), and a bachelor’s degree in business management (from National Louis University).

So Rathbun knows the excitement you can feel when your work is finally in print and considers that feeling when she shares the work of others, a trait the faculty authors greatly appreciate.

“It’s wonderful that Ms. Rathbun has spearheaded this effort to highlight our faculty’s work,” said William S. Quillen, DPT, PhD, FACSM, professor and director of the School of Physical Therapy & Rehabilitation Sciences.

“I am grateful for Gina’s leadership in making this project happen for faculty,” said Lennox Hoyte, MD, professor and director of the Division of Urogynecology and chief medical information officer for USF Physicians Group.

“The opportunity to share my book with my colleagues at USF Health was great!” said Rebecca M. Lopez, PhD, ATC, CSCS, assistant professor and director of the Post-Professional Graduate Athletic Training Program in the Department of Orthopaedics and Sports Medicine in the USF Health Morsani College of Medicine. “We are all busy, and we don’t always have a chance to share the projects we are working on with our colleagues.  Gina’s faculty book program is a great way for USF Health faculty to share the great news when a book is finally complete!”

Before joining USF, Rathbun spent 10 years working for the Tampa Port Authority, marketing the fledgling port and selling commercial real estate throughout the port, downtown and channel areas of Tampa. As director of cruise marketing, her efforts are credited for the increase in passengers coming to Tampa’s port (from 250,000 to more than 800,000 over five years), and for bringing Royal Caribbean cruise line to Tampa’s port.

Topics for the USF Health faculty book program run the gamut. Most dive into the details of our bodies from head to toe. A few branch out a bit, offering test strategy, even poetry.

“Our physicians have contributed a wealth of information over the past several years.” Rathbun said. “When I came here, I wanted to showcase the depth and breadth of knowledge in our health care providers. It’s really a celebration of their scholarly and artistic talents.”

Photos by Eric Younghans, USF Health Office of Communications