The Greater Delaware Valley Chapter of the National Multiple Sclerosis Society constantly strives to serve the MS community in ways that are impactful and make a difference for the 14,000 local families living with multiple sclerosis. To that end, we have developed programs and services that benefit not only our clients and their families but the entire community.
One of the ways the Society is expanding its services to the MS community is by providing healthcare facilities with community impact grants to increase access to MS care in underserved populations. These grants are awarded annually and are open to any nonprofit institution serving the MS population specifically.
To be eligible for a grant, the institution must be providing a service for the benefit of people living with MS, and it must not be duplicative of a service the Society already provides. The applicants must go through an application process that includes the submission of a grant proposal and an in-person presentation. The grant review committee takes into consideration how the proposed program will enhance delivery of services for people in the MS community and how it aligns with the Society’s strategic plan.
Making a true impact in the community
“The whole purpose of the community impact grants is just that, to make a true impact in the communities we serve,” says Karen Mariner, vice president of advocacy. “We want to improve the quality of life for people living with MS regardless of their financial situation.”
So far, the Society has awarded nearly $250,000 in community impact grants across the Greater Delaware Valley. In the Philadelphia area, we’ve provided $50,000 to Thomas Jefferson University to support a social work position. In the Lehigh Valley, we’ve awarded a two-year $98,000 grant to Lehigh Valley Hospital to provide social work support for our clients. Additionally, Good Shepherd Rehabilitation received a one-year grant for $45,000 to provide wellness programs, and St. Luke’s received a $44,000 one-year grant to provide support for an MS social worker, a position that is generally not funded by the hospitals.
“Social work positions specifically for MS patients usually go unfunded,” says Mariner. “The grants we were able to provide Jefferson, Lehigh Valley Hospital and St. Luke’s made it possible for the hospitals to fund these critical positions which are so important to our clients. More than 7,000 families are now benefiting from this program.”
New community grant awarded
Recently, the Chapter awarded a new community impact grant for increased access to MS care to Total Rehab & Fitness (TRF) in Cherry Hill, NJ This initiative will enable the Society to increase access to MS care and reach out to underserved communities in the South Jersey area who need rehab services.
This grant will make it possible for TRF to increase access to MS patients, including those in underserved communities, by providing rehabilitative services, regardless of patients’ ability to pay, in an effort to improve the quality of their lives.
“We’re unique because, unlike traditional therapy programs, there is no defined discharge date,” said John Marmarou, DPT, director of therapy services at TRF. “Patients come to the facility and work with the staff through the critical stage of their illness. Once their functional capacity has plateaued, we offer a maintenance program to help them continue their progress and ensure they do not regress.”
TRF is a freestanding interdisciplinary practice that provides medically based rehabilitation services and exercise programs to improve the quality of life for patients with chronic disease.
“TRF’s focus is parallel to the strategic direction of the National MS Society,” said Mariner. “The organization’s interdisciplinary approach to therapy was developed to help halt disease progression and restore function now. All our efforts are focused on enhancing care for people with MS and improving the quality of life for those affected by the disease.”
Kenneth McCarty of Hammonton, NJ was diagnosed with MS in 1991 at the age of 26. Once an avid athlete, he enjoyed running, baseball and other sports. Because of his disease progression, McCarty must now use a wheelchair to transport himself from one place to another. Forced to retire at an early age, McCarty found himself at a loss, spending most of his time at home indoors and feeling socially isolated. In 2010, our chapter awarded him a scholarship to TRF to receive rehabilitation services in an environment that allowed him to socialize and reconnect with the community. This was especially important because his insurance company did not cover ongoing rehabilitation services. McCarty is now able to walk with the use of parallel bars and has built up tremendous upper body strength to lift himself in and out of his wheelchair. The confidence he now has makes McCarty feel like his old self again.
Renee Kleek-Laureyns of Palmyra, NJ has been attending TRF since January 2011. “Falling on a weekly basis used to be the norm for me. The combination of physical, occupational and behavioral therapies have made significant improvements to my well-being,” she says. Since beginning therapy, Kleek-Laureyns reports having had just one fall. “I have learned to value my health and abilities.”
To evaluate the program’s success and further assess improvement, TRF will initiate three validated patient tests and conduct an evaluation focusing on falls, hospitalizations and exacerbations by comparing each patient’s condition for the period of one year prior to treatment with the patient’s condition at the conclusion of the first year of treatment.
This is the first time a community impact grant has been awarded to a freestanding facility. “This is a new model for us,” says Mariner. “The potential benefit of TRF’s success could have significant implications in healthcare benefits.”
Because insurance companies don’t normally pay for maintenance therapy, TRF’s proposed model will afford people who have tapped out their insurance benefits the opportunity to continue their program under the guidance of a licensed therapist. If the results are positive, the Society could then present these findings to insurance companies in an effort to advocate for more healthcare benefits.
Our commitment to improve quality of life
These community impact grants are just another way for the Society to better serve our clients. We are committed to improving the quality of life of people living with MS and their families.
“We depend on fundraising dollars to keep this program going,” says Mariner. “Thanks to mass-market events like our walks and bike tour and the generosity of individual donors, we’re able to fund programs that make a difference in the community.”
Members of the grant review committee include Greater Delaware Valley Chapter President Tami Caesar and Vice President of Advocacy Karen Mariner, MSS, MSCIR, along with board of trustee members Valli Baldassano, Michael Bogdonoff, Laura Grossi-Tyson and Linda Kraemer, a research advocate who was instrumental in revising the application process.
Grant applications for the coming year will be available in early March. For more information on the Society’s community impact grants, please contact the chapter at (215) 271-1500.
About Total Rehab and Fitness
Total Rehab and Fitness was founded by John Marmarou, DPT, in 2009, to provide medically based exercise programs and rehabilitation services to improve the quality of life for patients with chronic disease. The goal of Total Rehab and Fitness is to reduce patient hospitalizations; to help patients with disabilities and impairments through a multidisciplinary team approach to care; and to increase longevity, improve function and lower healthcare costs for patients with chronic illness. For more information, please visit totalrehabandfitness.com or call (856) 424-5552.
About the National Multiple Sclerosis Society
MS stops people from moving. The National MS Society exists to make sure it doesn’t. We do this through our home office and 50-state network of chapters by funding more MS research, providing more services to people with MS, offering more professional education and furthering more advocacy efforts than any other MS organization in the world. Join the movement at nationalMSsociety.org or by calling 1-800-FIGHT-MS.
Yarissa Reyes is Marketing & Communications Manager for the Greater Delaware Valley Chapter of the National MS Society, overseeing advertising, marketing and public relations. Prior to joining the National MS Society, Reyes was the marketing and communications manager at Living Beyond Breast Cancer, a nonprofit organization based in Haverford, PA. She also served as senior public relations coordinator for the American Association for Cancer Research in Philadelphia. Reyes resides in Pennsauken, NJ with her husband, Hector, and daughters, Alexis and Maricela.