Comprehensive Center Made Possible Thanks to Donors
A diagnosis of ALS can be discouraging for patients and family members, but a center at Barrow offers hope for those affected by this and other neuromuscular disorders.
The Gregory W. Fulton ALS and Neuromuscular Disorders Center opened its doors in early December 2013. Among the first of its kind in the Southwest, the center not only offers comprehensive clinical services for patients and families, but is also paving the way for the future of ALS research.
The 32,000-square-foot facility, located on the campus of St. Joseph's Hospital, offers all of the services ALS patients need under one roof.
“The new center is essentially a one-stop location for patients to receive all of their ALS care,” says Shafeeq Ladha, MD, director and the Ira A. and Mary Lou Fulton Chair in Motor Neuron Disease. “Before, services were fragmented and patients might have had to go to different locations for different aspects of care. It’s hard for people with ALS to travel, so having to go to different places has a big impact on their quality of life.”
A community resource
Improving quality of life for both patients and family members is what the new center is all about.
Amyotrophic lateral sclerosis – also known as Lou Gehrig’s disease – is a progressive and neurodegenerative disease in which the cells that control voluntary muscle movements die, leading to paralysis and, ultimately, death. It is only one of a number of neuromuscular disorders, such as muscular dystrophy and multiple sclerosis, treated at the center.
In addition to housing subspecialty-trained neurologists, the center is also home to social workers, nutritionists, respiratory therapists, and physical, speech and occupational therapists. The facility features exam rooms, a therapy gym, an infusion suite, dedicated clinical research suites, a botulinum toxin lab and a neurodiagnostics lab for specialized testing.
Patients are invited to take advantage of the resource room, stocked with materials about neuromuscular diseases. Community classes on relevant topics – such as wheelchair maintenance and managing feeding tubes – are offered by a dedicated community outreach staff.
“Learning how to take care of someone with ALS can be scary. We want to help patients and their family members feel more comfortable, which will make a big difference in their quality of care,” says Dr. Ladha.
Comfort was also top of mind when considering the center’s aesthetics. The nature-based décor is designed to evoke a sense of peace, tranquility and hope. The artwork and photographs, all of which were created by donors or patients with ALS, add a personal touch.
A portion of the new facility will remain as shelled space to allow for future growth. Currently, more than 120 patients with ALS – some from neighboring states – and more than 1,000 patients with other neuromuscular disorders are treated at Barrow. Dr. Ladha expects that the new center could see an increase of 50 percent or more.
Working together to find the cures
Scientists don’t yet know what causes ALS and there is no cure. There is just one FDA-approved medication that slows disease progression and it is only marginally effective. Center staff, including Robert Bowser, PhD, want to change that.
The new center integrates researchers and clinicians so that they work side by side developing new treatments for ALS and other neuromuscular disorders. While they still conduct basic science research in a lab housed on the main hospital campus, scientists participate in and lead clinical research studies, and also have opportunities to spend time with patients and families at the center.
“When researchers get to interact with the patients and families that they’re trying to impact, it’s very motivating,” says Dr. Bowser, research director and the John and Betty VanDenburgh Chair in Neuromuscular Disease. “At most facilities, that’s not the norm. Clinical care and research are usually two separate silos.”
This integrative approach will allow the center to develop and test new treatments quickly. “We believe that we will be leaders in bringing new drugs to the forefront. Some of these will be tested for the first time ever on patients at our facility,” adds Dr. Bowser.
In addition to offering a multitude of clinical trials, the center will also partner with community and national organizations to maximize their research potential. They have already signed an agreement for a collaborative research program with the University of Arizona College of Medicine in Phoenix, and they anticipate forming partnerships with pharmaceutical companies to facilitate the development of new drugs.
“With grant monies becoming more and more limited, pharmaceutical partnerships will become an important piece of the puzzle,” explains Dr. Ladha.
A personalized approach
The center’s namesake, Gregory Fulton, was a patient at Barrow before his death from ALS in 2011. The construction of the center was primarily funded by a $2.7 million-gift from his parents, Mary Lou and Ira Fulton. The couple previously gave $2.5 million to help unravel the mysteries of this disease: Why do some people develop ALS while others don’t? And why are treatment options more effective for some individuals than they are for others?
These are the type of questions that Drs. Bowser and Ladha hope to answer in time. Much of their clinical research will focus on the discovery of biomarkers, biological markers that indicate the presence of disease or other conditions. Identifying these markers will allow for a personalized approach to treatment, in which individuals undergo different treatments based on their genetic or biochemical makeup.
Also key in making these discoveries is the center’s new tissue banking program, in which patients elect to donate their brain or spinal cord after their death. “It’s very important to have these types of tissues to look at the cells and better understand the pathology of the disease,” says Dr. Bowser. “It just adds to our armament of what we can do for patients in the future.”