New officers focused on uniting the multiple system atrophy community to defeat the rare and terminal, neurodegenerative disorder. Expansion of the Board of Directors will be announced soon as important work continues.
The Multiple System Atrophy Coalition has elected new officers of its board of directors during their annual general meeting. Incorporated in 1999, The Multiple System Atrophy Coalition is a growing nonprofit 501 (c) 3 organization dedicated to serving patients, caregivers and families affected by the neurological disorder Multiple System Atrophy (MSA) through direct support programs as well as providing grants to research. The board is comprised of those who have been personally affected by MSA, as well as several healthcare and pharmaceutical industry professionals.
Newly elected officers are Judy Biedenharn of Grove City, Ohio as president; Don Crouse of Charlotte, North Carolina as vice president; Carol Langer of Boston, Massachusetts as treasurer; and Pam Bower of Halifax, Nova Scotia as secretary. Immediate past president, Vera James of Walnut, California continues to serve on the board in her role as patient support coordinator.
The Multiple System Atrophy Coalition
Our funding of the Global MSA Patient Registry is an exciting step in the MSA Coalition’s active involvement in the search for a cure
Judy Biedenharn, a retired registered nurse and past caregiver to her husband Ned brings her unique perspective of being both a medical professional and a hands-on caregiver to the role of president. Ned was diagnosed with MSA in 1991 and died in 2003. While Ned was living, Judy hosted support group meetings in their home. After joining the board in 2008, she began offering phone support to MSA families via the MSA Coalition’s toll free support hot line 1-866-737-5999. Judy has also been responsible for organizing the very popular MSA Coalition annual patient conference enabling her to help countless MSA patients and caregivers over the years. In 2012 and again in 2014, Judy was present at FDA hearings and spoke out on behalf of MSA patients who suffer symptoms of neurogenic orthostatic hypotension, successfully advocating for the approval of the drug Northera (droxidopa).
Don Crouse, one of the MSA Coalition’s founding board members, has accepted the role of vice president. Joining the Board of Directors in 1999, Don became connected to multiple system atrophy through his career in the pharmaceutical industry. Don served as the ProAmatine (midodrine) Product Manager at Roberts Pharmaceuticals (now Shire), as well as the National Brand Director at Chelsea Therapeutics, where he worked on gaining approval for Northera (droxidopa). Both products are approved in the US for the treatment of neurogenic orthostatic hypotension, a condition that affects approximately 80% of MSA patients. Don’s major accomplishments over the past several years include establishing a dedicated MSA research fund, research grant program and scientific advisory board. Don also maintains the MSA Coalition website and social media sites and has stepped up fundraising efforts.
Carol Langer, a retired financial executive with more than 30 years experience in the management of technology companies, brings her expertise to the role of treasurer. Carol was a caregiver for her husband Rob, who was diagnosed with Multiple System Atrophy in 1998 and died in 2009. She has been an active participant in both on-line and in-person support groups for MSA since shortly after her husband became ill, and currently moderates a monthly webinar for caregivers of people with MSA. Carol also currently serves as a Director of Edmund Optics, Inc., a multi-national manufacturer of precision optical components, as a Trustee of the Huntington Theatre Company in Boston, and as Chair of the Neuroscience Advisory Committee at Beth Israel Deaconess Medical Center in Boston. Carol joined the Board of Directors in 2013.
Pam Bower, a senior consultant for an IT services company, brings her organizational skills to the role of secretary. As a long time grassroots advocate for MSA awareness and support, she has helped countless families find needed information about the disease since the mid-1990’s when her mother-in-law was stricken with the cerebellar form of multiple system atrophy. She has strongly promoted March as Multiple System Atrophy Awareness Month since 2010 and this past year pushed for the successful introduction of House Resolution 518 to the US Congress by Rep. Keith Ellison of Minnesota. Rep. Ellison submitted the resolution on March 13, 2014 in support of national recognition of MSA Awareness Month. http://gpo.gov/fdsys/pkg/BILLS-113hres518ih/pdf/BILLS-113hres518ih.pdf Pam joined the Board of Directors in 2013.
The MSA Coalition announced in January 2014 the funding of five MSA research grants for a total of $219,000 including the “Global MSA Patient Registry”. The project is a joint collaboration of researchers from Austria and the USA and will facilitate future international MSA clinical trial recruitment and collection of anonymous patient information to track the course of the disease.
“Our funding of the Global MSA Patient Registry is an exciting step in the MSA Coalition’s active involvement in the search for a cure,” stated Judy Biedenharn, President of the Multiple System Atrophy Coalition. “We are grateful to Rex Griswald’s Quest to Cure MSA initiative for shining the spotlight on the MSA Coalition this past fall at the CARRE foundation fundraiser which resulted in nearly $144,000 being contributed to our research fund, enabling this and other research projects to be supported in the first quarter”, continued Ms. Biedenharn.
“Besides all the activity with research grants, we also were honored to be invited by the Kerry Simon Fight MSA initiative to attend an important fundraiser in Las Vegas in February”, Don Crouse, Vice President of the Multiple System Atrophy Coalition reported. “In conjunction with that fundraiser we also co-hosted a luncheon where we sat down with a number of other MSA advocates in the US to work out how we might collaborate more closely on raising awareness and funding research. Some exciting additions to our board will be announced soon that were directly influenced by this historic meeting.”
“Don Crouse and I both were honored to meet celebrity chef Kerry Simon and his business partner Elizabeth Blau and their associates and discuss how our organizations can move forward together as we work to defeat Multiple System Atrophy and serve the growing needs of patients, caregivers, doctors, and families in the MSA community with as many education and support resources as possible”, said Ms. Biedenharn. “Having a celebrity come forward with this disease, although it deeply saddens us, also reinvigorates us to work even more urgently towards our goals.”
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.