In his new role, Dr. Kellerman will be representing the needs of current caregivers as well as focusing on educating healthcare professionals unfamiliar with this rare neurological disorder.
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. Larry Kellerman of New London, IA 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. Larry is the proud husband and care partner of Colleen, a Multiple System Atrophy Type C patient. Like so many other current patients of this rare neurological disorder, the journey to this diagnosis was not an easy one. After five years, five different physicians and multiple diagnoses, Larry and Colleen were finally given the news she has Multiple System Atrophy on March 13, 2013. As Colleen’s care partner, Larry became an integral part of this journey and brings that experience to the board where he has been designated as the official caregiver representative. Larry Kellerman, PhD
With a doctorate degree in Science Education and thirty years of teaching and learning at all levels, from 2nd grade to graduate school, Larry is uniquely suited to spearhead The MSA Coalition’s new initiatives in educating caregivers, doctors and other health professionals about the disorder. Larry is also committed to ensuring the development and use of the upcoming global MSA patient registry which is much anticipated. “I met Larry and Colleen at our MSA Patient and Family Support conference held in Milwaukee last September”, Pam Bower, MSA Coalition executive board officer recalls. “This was their first time attending one of our conferences as Colleen had only recently been diagnosed. Larry had lots of questions and expressed a deep interest in the state of current research, we clicked immediately on many levels. He and Colleen also showed their genuine care and compassion for the other MSA families they met that weekend. They really made a big impression on many people and I knew Larry would be a great fit as a future board member. His ability to analyze, understand and articulate the research side as well as empathize closely with MSA patients and other caregivers certainly makes Larry a tremendous asset to our board. I’m thrilled to welcome him and Colleen as part of our team to defeat Multiple System Atrophy.” Dr. Kellerman and Colleen learned of the MSA Coalition early on while looking for information and support. “The resources they provide are very helpful and learning about research into the causes and possible cures of the disease is very important to us”, said Larry. “The Coalition also provided us with access to others who are patients and caregivers – or in some cases past caregivers. I am honored to have this opportunity to represent past, present and future caregivers and support their wishes and needs when possible”, he concluded. 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.