Windows of Hope Genetics Information Center, Inc

The Holmes County, Ohio area hosts the largest Amish community in the world and consequently the largest number of inherited medical disorders among Anabaptist populations. This corpus of genetic disorders has been under study since the 1960s when Drs. Victor McKusick and Harold Cross began genetic studies in this community. Since 2000, this population has been more intensively studied by Drs. Cross and Crosby using modern genomic testing in the search for disease mechanisms and therapies.

It is a common reaction of “plain people” to be extremely committed to the care of their special children, especially those who are physically or mentally challenged. They consider these children as “God’s special children” in keeping with Anabaptist culture. But families often face challenges in caring for their special offspring for they frequently lack a specific diagnosis and, more significantly, lack of treatment and long-term care guidance.

So when Drs. Cross and Crosby suggested starting a center to address these problems, it was met with enthusiasm by the community. Following extensive discussions, Amish community leaders appointed a committee in March of 2008 to study the need and feasibility for a genetics center.   Based on population surveys, discussions with community physicians and hospital officials, as well as visits to other clinics in Geauga County and Lancaster County, the committee circulated the following recommendation to the community.

A center to provide information and coordinate treatment as a means of addressing the genetic-based health care issues in the community is needed. Because a clinical care facility providing comprehensive clinical care requires major funding by the community, it was opted not to go this route at this time. Also since excellent family practitioners (many with an Anabaptist background) willing to provide primary care for these disorders were already available, providing them with the technical information and resources to manage the clinical aspects would reduce expenses and the need for consultative referrals in many cases. It will be one of the major goals of the center to provide these resources.

In early 2009, the Amish community approved plans for such a center and appointed a Board of Directors which formalized the establishment of the Windows of Hope Genetics Information Center (WHGIC). It is located in the Walnut Creek Community Building (PO Box 208, Walnut Creek, OH 44687) and will be available for consultation and educational meetings with access 24/7 for crisis care. Its primary aim is to help families and patients understand the nature of inherited disorders and how to cope with them. Primary medical care will be provided by local physicians with consultations available from specialists located in regional health centers.

The Genetics Information Center will be a local (501.3.c) facility designed to give everyone access to extended information services as well as assistance in coordination of care. Working with local physicians, a nurse/coordinator will assist in securing referrals, interpretation of medical tests and consultations, and ensuring that long-term monitoring, treatments, and follow-up care is available. It will eventually have examination facilities for visiting specialists and basic tests such as routine laboratory studies, EKGs, etc.   The laboratory facilities will aid in expediting routine blood work currently done elsewhere and will also be available for obtaining and storing materials for genetic testing and investigational studies by qualified groups. A conference room for educational forums for the public, health care providers, and for family support meetings will be available. These educational programs are seen as playing a vital role in understanding genetic disorders and their risks and treatments.

The Windows of Hope Genetics Center will be administrated by a local Board of Directors committed to addressing the needs of those with inherited disorders. Various advisory committees will assist the Board in overseeing the various functions of the Center.