Newborn Screening Webinar Panelists

William “Bill” Morris, Grey’s Gift
Grey's GiftBill is a pediatric home health care nurse working with special needs children for the last 16 years. He completed his vocational nursing course at St. Phillips College. Mr. Morris and his wife, Nicole, lost their son, Greyson in 2008 to Krabbe Disease. One of his other sons was diagnosed with phenlykentonuria (PKU) at birth as a result of the Texas Newborn Screening Program 13 years ago and he is now a healthy, active student.

After Greyson’s passing and the lack of newborn screening for Krabbe disease, they successfully pushed for legislation that created that Texas Newborn Screening Advisory Committee, also known as “Greysons” Law. Mr. Morris speaks to local hospitals and organizations to educate others of the importance of newborn screening and early detection of rare disorders, as well as working with other organizations targeted to educating others about Krabbe Disease and other leukodystrophies.

Jim Bialick, Newborn Coalition
Newborn CoalitionJim Bialick is an expert on health policy as it pertains to health information technology, newborn health and public health systems. He has a keen interest in the overall modernization of healthcare and seeks to work with stakeholders to develop new and innovative methods to personalize the care experience in a way that will improve health outcomes and reduce their costs.

He is a co-founder and the Executive Director of the Newborn Coalition as well as the Newborn Foundation, two action-oriented and health IT forward organizations that work domestically and internationally to develop and increase the awareness of technology solutions that improve care delivery and preventative screening infrastructure for our most vulnerable citizens.

Fred Lorey, Ph.D.,Chief Genetic Disease Screening Program (California Department of Public Health)California Department of Public Health
Named Acting Director of Genetic Disease Screening Program (CDPH) in 2007.   NBS and prenatal screening. Member of ISNS, CA rep for APHL, and member of Secretary Sebelius’ Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). also on nomination and prioritization subcommittee of the SACHDNC.

Moderator: Dean Suhr, MLD Foundation
Dean is co-founder and President of the MLD Foundation, serving families and MLD researcher around the world involved with metachromatic leukodystrophy, a rare terminal neuro-metabolic condition. Two of his three children have MLD, Darcee passed away at age 10 in 1995 and Lindy is alive and doing better than predicted at age 32. Dean is active on behalf of the rare disease community including special interest in global health policy, registries, diagnostics, newborn screening, FDA/NIH issues and empowering other advocacy organizations.

Dean is a frequent conference speaker (NIH, orphan drugs, rare diseases), regularly “educates” and testifies in Washington DC, and is not afraid to tackle big issues in a collaborative fashion. His formal schooling at the University of Southern California was in electrical engineering. He spent 30 years working in project management, operations, manufacturing, sales, and business development with the last 10 years involved in start-ups working on everything from high technology to cow manure. He is developing a health resulted iPhone application.