Monday, July 10, 2017

ALS care brought to South Florida with help of MGH and patient gift

Smith.

When Phil Smith, a Florida resident, philanthropist and entrepreneur, was playing golf in September 2014, he noticed his swing was off. Smith thought he needed a lesson, but when symptoms worsened and he developed weakness in his left arm and hand, he made an appointment with his family physician and local neurologist.

Smith received a provisional diagnosis of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a terminal neurological disorder that causes progressive degeneration of nerve cells in the spinal cord and brain occur. There are few treatments available for this devastating disease.

After his diagnosis, Smith traveled to hospitals nationwide with his close friend, David Rooney, MD, to explore treatment and research options.

“Phil felt as if he wasn’t offered a lot of research options, and left those visits not feeling good,” says Rooney, also of Florida. It was then that Pat Taylor, MD, Smith’s acquaintance and CEO of Holy Cross Hospital (HCH) in Fort Lauderdale, Florida, recommended he visit Massachusetts General Hospital (MGH). On April 24, 2015, Smith came to MGH to meet with Merit Cudkowicz, MD, chief of MGH Neurology.

“We met with staff and Dr. Cudkowicz,” Rooney says. “It was very easy and friendly. The MGH ALS center offered great care and access to research. They shared hope.  Those are the things that attracted Phil and his family and me to MGH. Merit was very sweet and understanding.”

A Look to the Future

One month later, Smith and Rooney were invited by Cudkowicz to an ALS symposium in Charlestown where they were surrounded by other ALS patients, in similar or worse condition than Smith.

“It was shocking because you saw other patients at different phases of their illnesses, which was a reality check for Phil,” Rooney says. “We listened to people talk with their eyes through a computer. Phil was on a rolling walker seeing different ways this illness affects people knowing this was his future

It was on that day that Smith and Rooney had an idea that would soon become a reality.

In September 2016, Smith donated $7 million to fund the development of an ALS and movement disorders clinic at HCH and to help finalize a neuroscience institute, which had been underway for several years.  The donation also includes support a new clinical trial led by the MGH Neurological Clinical Research Institute that enrolls participants at HCH and MGH.

“It was Merit’s compassion, knowledge and caring that projected all the way through her staff that sold Phil on it,” Rooney said. “They wanted to duplicate that in South Florida. They discussed their research, which was a unique venue.”

The clinic and institute were both named after Smith for his generous support to HCH, and his philanthropic endeavors in the South Florida area. Smith was able to see his dream realized, however, Smith died three months later on Dec. 14, 2016, just after his 70th birthday.

“Mr. Smith was an amazing person and leader in his community,” Cudkowicz says. “From the beginning he wanted to see how he could help others.”

Care and Collaboration

The collaboration between MGH and HCH involves both care and research.  The team at MGH, which consists of physicians and researchers in the Neurology Department, will work closely with the team at HCH on design of the clinic, the multidisciplinary care program and TeleHealth consultations. They also are working together on clinical trials and research opportunities for the patients who live near HCH.

The teams have met several times in person in Fort Lauderdale and Boston, and have biweekly teleconference meetings as well.

Eduardo Locatelli, MD, medical director of the Phil Smith Neuroscience Institute, says the need for this type of specialized care in the South Florida area is crucial, and currently limited.

“If we look at the population in the area, there are 400 people with this condition,” Locatelli says. “There’s nowhere to go for care around here. With traffic from Boca Raton, West Palm Beach and Fort Lauderdale, it might take two to three hours to get to a clinic for treatment.”

Locatelli added that as the disease progresses, it causes weakness. As patients grow weaker, it becomes more difficult and ultimately impossible to travel far for treatment.  

“Bringing a clinic to the local area is an absolutely needed service,” Locatelli says. “Patients with ALS are really beginning to show how useful this clinic is. Phil married the two centers and it’s been absolutely great. We’ve developed friendships. The relationship is very strong.”

The Phil Smith ALS Clinic currently is operating at the Neuroscience Institute and Locatelli and his team are working with three ALS patients to determine what is most needed in a physical space – how wide the entrance should be, what the bathroom should look like – from the patient’s perspective.

Doctors in the current ALS clinic see patients once per month, although that will likely change to weekly in the next two months.  Many MGH patients – who live full-time in the Boston area and part-time in Florida – have already scheduled visits at the HCH clinic. The newly designed building is slated to open November 2017.

Locatelli and his team jumped in fast and with their hearts. “We are learning from each other and helping each other so that people with ALS in Ft Lauderdale area and in Boston get the best care and access to research,” says Cudkowicz.

Smith’s friends and physicians say the new collaboration, clinic and research are a wonderful way to pay tribute his life and legacy and a way to help ALS patients in the future.

“Phil Smith was an amazing person – a kind compassionate leader– who inspired others to do good,” Cudkowicz says. “The love for him in community is palpable. He always was thinking of others and what he could do to help them. Starting the Phil Smith ALS Clinic is a natural extension of his generosity and altruism.”

 

 

 

 

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