John “JR” Pagliarini joined the fight to strike out ALS 19 years ago, and has not wavered in his support since. Pagliarini was recently honored with the “Spirit of Lou Gehrig” award for his 15 years as board president of the ALS Association Rhode Island Chapter.
Pagliarini has no family connection to the disease. Instead, he became involved in the board when a friend’s father reached out to him prior to his death from ALS.
In a press release, the ALS Association Rhode Island Chapter explains that the award, which seeks to honor an individual or group who has exhibited both compassion and an exceptional commitment to advancing the ALS cause, was deeply fitting for Pagliarini, who is notorious in both his tenure as board president and in his extraordinary volunteer service. However, Pagliarini was hesitant to accent the notoriety that comes with the award. Rather, he said, “I do this simply because it’s the right thing to do. I feel that the challenges of ALS as a disease exceeds many others in life, and that helping in this fight for an eventual cure is important, regardless of family or personal connection.”
While shying away from the spotlight, Pagliarini is a well-known member of the Rhode Island Community. A graduate of Bishop Hendricken, he has held many roles throughout the state in his 30 years of work at the national, state and local levels of government, along with the private sector. He served as the State Director for United States Senator Lincoln Chafee, Deputy Chief of Staff to Rhode Island State Governor Donald Carcieri, and chief of Staff and Senior Executive Advisor to Providence Mayor Angel Taveras. He now serves as the President and Chief Operating Officer of the D.C. based Fabiani and Company.
In his speech, Pagliarini turned the focus away from himself.
He accepted the award on behalf of past and present patients, their caregivers and families, along with medical researchers, in hopes that the occasion would inspire others, with or without a personal connection, to join the fight against ALS.
ALS, or Amyotrophic Lateral Sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
Pagliarini describes the disease as both “awful and inhumane”. First discovered in the late 1860s by a French neurologist, the disease did not gain public attention until the death of baseball player Lou Gehrig in the early nineteen forties. ALS is caused by the deterioration of a select group of nerve cells and pathways to both the spinal cord and brain, and leads to progressive paralysis of the muscles. While ALS does not impact a person’s senses of sight, touch, hearing or smell, over time it takes complete control over a person’s voluntary movements, making it impossible for a person to live without care as the disease progresses. The ALS Association estimates in the United State, roughly 6,000 people are diagnosed per year, and explains the average life expectancy of a person with ALS is two to five years from diagnosis. Ongoing research is crucial in attempting to find a cause, a means of prevention, and, in turn, a possible cure to ALS.
On a local level, the ALS Association Rhode Island seeks to empower patients and their families to live full lives by providing them with cost-free support and services. The chapter generally serves 70 patients a year in Rhode Island.
Sadly, Pagliarini explains that the organization tends to lose as many patients to the disease as they gain within a year, a terribly troubling statistic.
ALS Association of Rhode Island states on their website that patients are able to receive a variety of services including home visits, consultations, equipment loans, handicapped transportation and ramp assistance, respite care, education, support groups, along with medical care at the Louise Wilcox ALS Clinic, where the organization underwrites all medical care.
The Evening of Hope, held on June 22, benefited the clinic and patient survives throughout Rhode Island. In addition to the Evening of Hope, the ALS Association of Rhode Island conducts a variety of events throughout the year to help support their local care services and initiatives. Upcoming is the 23rd Annual Golf tournament in North Kingstown on July 23 and 17th Annual Walk to Defeat ALS at McCoy Stadium in mid-September.