Waging war against MSA is both a personal fight to conquer the beast that stole my beautiful mother, and a passionate goal to help those now engaging in the same battle. If those of us who have travelled this path do not help, then who will?
Howell, New Jersey (PRWEB) September 05, 2014
The Multiple System Atrophy Coalition, a growing nonprofit 501(c) 3 organization dedicated to serving patients, caregivers and families affected by the neurological disorder Multiple System Atrophy (MSA), announced the appointment of Dr. Cynthia Roemer of Howell NJ to its Board of Directors. MSA is a rare degenerative neurological disease of the brain and spinal cord, and is often classified as one of the “Parkinson’s-Plus” conditions. In addition to resembling Parkinson’s disease (MSA Type P), MSA has additional symptoms involving impairment of the cerebellum (MSA Type C) and/or the autonomic nervous system.
Cyndi was primary caregiver to her late mother, Dolores, until losing her to MSA on Mother’s Day of 2009. The creator of Faces of MSA, a video tribute to MSA patients illustrating the devastation and loss attributed to this disease, Cyndi is a strong proponent of bringing awareness to this rare disease. In 2012, she and her family founded MSA NJ, a non-profit to support those impacted by MSA throughout the tri-state area. Cyndi worked with the MSA Coalition to host their annual conference in NJ that same year. Each year since, MSA NJ has provided support, awareness, and funds for research.
Determined to ease the journey for other patients and families dealing with the impact of MSA, Cyndi is an advocate for the MSA Community. “Waging war against MSA is both a personal fight to conquer the beast that stole my beautiful mother, and a passionate goal to help those now engaging in the same battle. If those of us who have travelled this path do not help, then who will?” There are many lessons she learned about dealing with the disease and living life to the fullest in spite of the diagnosis. Sharing these lessons and tapping from her mother’s strength and determination, in order to help others is something she is driven to do.
“Cyndi is no stranger to hard work and dedication when it comes to meeting professional and personal goals,” stated Judy Biedenharn, President of the MSA Coalition. “Experience in education and volunteerism are valuable assets for any organization to have in their leaders, but add these to Cyndi’s intimate understanding of life with multiple system atrophy, and we have a dynamic combination that can only be described as a “win-win” situation for both patients and the Coalition. We value Cyndi’s experience and awareness of MSA issues and wholeheartedly welcome her as a member of the MSA Coalition’s Board of Directors”.
About Multiple System Atrophy
Multiple system atrophy is a rare and fatal disorder with less than 15,000 Americans diagnosed and 35,000 undiagnosed at any given time. According to the National Institutes of Health, "Multiple system atrophy is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems (neurogenic orthostatic hypotension), combined with motor control symptoms such as tremor, rigidity and loss of muscle coordination. MSA affects both men and women primarily in their 50s. MSA tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. Currently no cure is available."
About the Multiple System Atrophy Coalition
The Multiple System Atrophy Coalition is a positive beacon of hope standing up to a little known, rare, insidious disorder. Made up of dedicated volunteers, The MSA Coalition has a primary purpose of encouraging and funding research to find a cure. The Coalition also provides much needed patient and caregiver support, educational resources, and advocacy to create awareness and to fight for issues important to the MSA community. For more information or to donate to The Multiple System Atrophy Coalition, please visit: http://www.Multiple-System-Atrophy.org.