Open less than a year, USF ALS Center has great impact on patients

Although open for only nine months, USF ALS Center is rapidly becoming a major force in the battle to cure Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease).

ALS is a deadly disease that progressively paralyzes its victims, attacking nerve cells and pathways in the brain and spinal cord. Patients are robbed of the ability to walk, eat, speak, and eventually, breathe, and most live for just two to five years after diagnosis. 

Dr. Tuan Vu, director of the USF ALS Center.

The USF ALS Center opened in October as the first multidisciplinary university clinic of its kind in Tampa Bay and all of Central and West Florida.

“In my 20 years as an ALS physician and researcher, I have never seen an ALS center or clinic grow and develop with such explosive speed in its first few months,” said Clifton Gooch, MD, professor and chair of the USF Department of Neurology and an ALS specialist.

“Though the Center has been in full operation for only nine months, we have already had tremendous success in establishing state-of-the-art multidisciplinary care for ALS patients and in launching an ambitious portfolio of clinical trials focused on finding successful treatments for this disease.”

The impact of the USF ALS Center has been great for patients, one of which is Venice, FL, resident John Mingus.

John Mingus happily greets his doctor Lara Katzin, MD.

“USF has been an excellent resource that has extended my life,” said Mingus, who was diagnosed with ALS two years ago.

“They have been wonderfully responsive to patient needs. Typically, ALS patients will fill a month with six to eight appointments in order to see all of the specialists they should see. But at USF everything comes together. They are good folks.”

Mingus said he knew patients benefit from a multidisciplinary setting and was relieved when he heard USF was starting a program and that it was a joint project with the ALS Association.

The clinic was made possible by strong support from the ALS Association, Florida Chapter, and a generous donation from Stephen Blume and his fiancée Jennifer Leavengood. This gift was part of the USF: Unstoppable Campaign, a comprehensive fundraising effort by USF to celebrate the energy, vision and future of one of the country’s most exciting and engaged universities.

Among the significant accomplishments during the Center’s short tenure is its reach.  As excitement began to build in the year prior to the clinic’s launch, the number of ALS patients seen at USF reached a new high. However, in the months since the clinic’s opening, the number of new ALS patients seen in the clinic has doubled and now is two to three times the total number of new ALS cases diagnosed in Tampa Bay each year.

“Reaching so many patients so soon is a clear sign we are serving ALS patients throughout the entire region and not just in Tampa, and also reinforces the tremendous need for the clinic here” said ALS Center Director Tuan Vu, MD, professor of neurology and director of Neuromuscular Division at USF Health.

The USF ALS Center is also dedicated to developing new and effective therapies for ALS, and its debut as a major ALS research center has been equally successful. The Center has already earned membership in the world’s largest ALS research network (the Northeastern ALS Alliance, or NEALS), and has won grant funding for several clinical therapeutic trials, two of which are launching within the coming weeks.

Most research centers do not reach this level of clinical trial activity for at least three to five years after they are established, if ever.

Sharon Usher, RN, CCRC, nurse coordinator for the USF ALS Center.

Central to the Center’s early success, Dr. Vu said, is its nurse coordinator Sharon Usher, RN, CCRC, who was hired with the help of the Blume and Leavengood donation. The ALS nurse coordinator serves as the critical point person for ALS patients and their families as they seek care across multiple specialties and also as they consider participation in clinical trials. Any ALS Center’s success also greatly depends upon the ALS multidisciplinary team members. These highly trained healthcare professionals include not only the neurologist and nurse coordinator, but also physical therapists, occupational therapists, respiratory therapists, registered dieticians, psychologists, speech and language pathologists, and social workers, who work together to provide care across the spectrum for the diverse needs of ALS patients. 

USF ALS Center team includes professionals from multiple specialties.

“We are blessed with a group of outstanding and highly dedicated team members, and that makes all the difference to our patients and their families,” said Dr. Gooch.

Equally critical to the USF ALS Center’s success is its partnership with, and support from, the ALS Association (ALSA). USF hosted ALSA’s premier fundraising event, the annual Walk for ALS in Tampa Bay, on the USF campus in March. Together, USF and ALSA inspired more than 1,300 walkers to join the cause, meeting and exceeding the walk’s fund raising targets despite the ongoing challenges of a weak economy. This level of participation was a new record and a huge jump from last year’s total of 300.

For more information about the USF ALS Center, please call (813) 396-9478.

Story by Sarah A. Worth, photos by Eric Younghans, USF Health Office of Communications