2010-2012 Board of Directors: |
Chair, Jason Patnosh [Follow on Twitter @jpatnosh]
Bio: Husband, non-profit executive, Washington DC resident and New Jersey native
Jason is National Director of the nation's largest health-case based AmeriCorps program, Community HealthCorps, and Associate Vice President at the National Association of Community Health Centers (NACHC). NACHC is a non-profit organization whose mission is to enhance and expand access to quality, community-responsive health care for America’s medically underserved and uninsured. In serving its mission, NACHC the nation's network of Community Health Centers which serve 20 million people at more than 7,000 sites located throughout all 50 states and U.S. territories.
Vice Chair, Deborah Viola, PhD
Bio: mother of child with autism, community advocate, teacher of future public health leaders
Deborah is an Associate Professor and Faculty Advisor, Doctoral Internships, in the Department of Health Policy & Management at the New York Medical College School of Health Sciences & Practice. She also teaches courses through the New York Times Knowledge Network. She received her doctorate in economics in 1998 as a Robert E Gilleece Fellow at the City University of New York and has directed the health economics program at NYMC for the past 12 years. Recently, her research interests have focused on regional health care planning, the impact of preconception on adverse birth outcomes, the economics of women as they age, long-term care for the developmentally disabled, emergency preparedness for vulnerable populations, and the role of income support policies on population health. Active in several civic and professional organizations, Dr. Viola serves as a member of the Board of Social Services for Bergen County, New Jersey and as Board Member for MarbleJam Kids, a non-profit organization serving children with autism spectrum disorders.
Treasurer, Alison Whyte, MSW, MPP [Follow on Twitter @alisonlw27]
Bio: disability rights advocate, community organizer, Michigan native (but trying to act like a DC local), dog owner, world traveler
Alison is currently researching polices affecting people with disabilities in the Europe and Central Asia region as a consultant to The World Bank. They are trying to identify ways to ensure public benefits reach the people who need them and fully integrate people with disabilities into society. Previously, Alison was a Policy Specialist with The Arc of DC, where she served as an advocate for people with disabilities. Before that, Alison has worked in the U.S. and abroad on a variety of disability issues including education, leadership development, and recreation. Alison's sister has a rare genetic disorder called Prader-Willi Syndrome, which affects 7 genes on chromosome 15 (paternal). PWS affects approximately 1 in 10,000-25,000 newborns. There are less than 28,000 people in the United States and approximately 400,000 people living with PWS around the world.
Secretary, Catherine Calhoun, JD [Follow on Twitter @supercatcalhoun]
Bio: Rare disease projects + walk dog, drink coffee, read books, roast mashmallows (avoid medical appts)
Catherine lives in Saint Francisville, Louisiana. She’s mom to Ella and Billy (both in elementary school). Billy has a rare condition and a working dog, Picasso, from Canine Companions for Independence. Catherine volunteers for the MAGIC Foundation, Fibrous Dysplasia Foundation, and Children’s Rare Disease Network. In 2008, she and her family were honored at the Family Service of Greater Baton Rouge's 15th annual "Celebrate the Family," which recognizes families who demonstrate strong family values, contribute time and resources that strengthen the community, or have triumphed over adversity. Catherine graduated from the Paul M. Herbert Law Center at Louisiana State University in 1998.Michael Nolan
Bio: Father, Sales Manager, Active PTA Member and Coach
Mike has worked in the YMCA’s of NJ teaching swim lessons, acting as camp counselor and mentor to children in the area. He has taken a special interest in children with disabilities or other limitations, and developed strategic lessons to improve their comfort level in the water. Recently, Mike have been more involved in community affairs and making himself available at his daughter’s school, as well as coaching recreational sports. Mr. Nolan has a vested interest in making a difference in the lives of those afflicted and/or suffering with rare disease as his younger brother Craig had suffered from a rare cancer. His Anaplastic large cell lymphoma (ALCL) is a rare type of aggressive T-cell lymphoma, comprising about 3 percent of all non-Hodgkin lymphomas. Mike Nolan has a degree in Sociology from Boston College.
