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529 Lake Avenue St. James NY 11780 • 631-360-CURE (2873)

529 Lake Avenue St. James NY 11780

631-360-CURE (2873)

History Filomena Board of Directors

Cure MS Foundation of New York was founded by Filomena Lombardi in 2012.  Living with MS for over 16 years, Filomena decided the side effects of the available FDA approved treatments posed too great a risk as a young mother of two young daughters. Filomena’s hope and courage helped her seek some of the world’s best medical doctors throughout the world.  Through her experiences and education she became aware of how to manage this devastating debilitating diagnosis.  She has been successful in maintaining an active and vibrant quality of life despite this chronic disease, but most of all, she has been inspired to share with others, her experiences.  Filomena continues to live her life to the fullest and is tireless in her efforts to sharing her successful experiences with treatments and helping Researchers in finding the cure for MS.

 

The idea of creating this Foundation began after joining the Development Council at the World Class teaching hospital, Stony Brook Medicine in Stony Brook, Long Island.  Great things were happening there and it seemed that the Neurology Department held a special interest with Filomena’s family.  Her first hand experiences through family members proved to be invaluable

The Stony Brook Multiple Sclerosis (MS) Comprehensive Care Center was the first center of its kind on Long Island. Started in 1990 by Dr. Patricia K. Coyle, an internationally recognized expert in MS, the Center has about 1,700 patient visits a year. It is comprised of a team of individuals with extensive experience in MS.

 

This team focuses on patient care, education, and MS research:

Patricia K. Coyle, MD, the Director, is a recognized expert in nervous system immune-mediated and infectious disorders. She has been involved since medical school with patient care and research focused on MS.

Lauren Krupp, MD, the Co-Director, is a recognized expert in fatigue and cognitive issues, as well as Pediatric MS. She sees adult patients in the MS Center.

Patricia Melville, NP, is certified in MS Care, and as the Center's nurse practitioner provides rapid care and assessment, and assures a readily available communications contact.

Ruth Mahnken, RN, is the Center's ambulatory care and research nurse, with a long experience with MS.

 

The Stony Brook MS Comprehensive Care Center sees patients not only from Long island, but from all parts of the United States as well as from countries around the world. Patients have access to expert opinions for initial diagnosis and second opinions, current assessment, recommendations on best care, treatment for acute relapses, and treatment for bothersome MS symptoms. They have access to the state-of-the-art facilities at Stony Brook University Medical Center, which include the most advanced neuroimaging. They may elect to participate in one of many ongoing cutting-edge clinical research trials for MS that are being conducted at Stony Brook.

 

The Pediatric MS Center is one of six in the nation designated as a center of excellence by the National MS Society.  The National Pediatric Multiple Sclerosis Center at Stony Brook University Medical Center provides comprehensive care to children and adolescents with MS and related disorders. Our center was developed to advance the recognition, evaluation, and treatment of pediatric MS through the creation of a multidisciplinary program dedicated to expert clinical care and scientific research of children and adolescents with MS. An estimated five percent of individuals with MS have disease onset before the age of 18. Yet many pediatricians remain unaware that MS is also a disease of the young. Lack of awareness regarding pediatric MS in the medical community leaves affected children undiagnosed and untreated. For children and families, the diagnosis of MS can be frightening, but there are multiple opportunities to get assistance and comprehensive care.

 

Filomena’s treatments these past 16 years have been unconventional but extremely safe.  These treatments were monitored by Doctors but had never been included in clinical trials therefore they are not recognized as MS treatments for Insurance purposes or have FDA Approval for the treatment of MS.  She new the success she was having managing her disease progression and wanted those suffering to have the choice to add this to their regimine of care.  Hyperbaric Oxygen Therapy (HBOT)  is costly and is usually not covered by insurance due to the lack of studies on MS. But how could this be done?  After discussions, Dr. Patricia Coyle, had agreed to head a first of it’s kind clinical study with the inclusion of HBOT.  Clinical studies are expensive and funding was needed.

 

The solution....create Cure MS Foundation of New York  to help raise funds.  Our plan is to raise funds for this and future studies such as this one.  To bring awareness through Centers of Excellence.  To make available to everyone treatments that they chose to follow to help manage their MS, the way they chose to.  Have more options available that are not more frightening than the disease diagnosis itself.

 

MS is a complex disease and it is not the same disease for everyone as science has proven.  We will not stop until this disease is eradicated.  We will do our part to help find as many treatment options available to those suffering live a fuller more healthier life.

 

Thank you to the many generous and caring contributors to this cause.