Impact Award Descriptions (2014-2015)
1. Boston University School of Public Health
Program Name: ASD Gene-Link
Description of Program: Through the Impact Award, the Boston University School of Public Health expanded the work of the existing Family Support Program of the Autism Consortium, a collaboration of 5 hospitals in Boston (Boston Children's Hospital, Boston Medical Center, Massachusetts General Hospital/Lurie Family Autism Center, Tufts Medical Center, UMASS Memorial Hospital). The overarching goal was to improve patient and provider knowledge, awareness, and understanding of genetic testing for Autism Spectrum Disorders (ASD), and facilitate access to genetic services (including genetic tests and genetic counselors). The project entitled, "Genetics Education and Outreach for Autism Spectrum Disorder (ASD): ASD GENE-LINK" incorporated genetic testing information into existing autism support program for families; increased knowledge about genetics and ASD at many levels: over 30 families of children with ASD, providers in 6 Boston hospitals caring for children with ASD, and 6 Autism Resource Specialists.
Location: Boston, Massachusetts
2. Center for Jewish Genetics
Program Name: Video-based education and screening program for Jewish genetic diseases
Description of Program: The goal of this project was to increase awareness about Jewish genetic diseases in the greater Chicago community. Through the Impact Award entitled, “Outreach Expansion Efforts and Web-Based Screening Program," the Center developed a model for accessible, effective, at-home screening/education that reached 349 high-risk individuals (177; 51% were found to be carriers) during the project period. The project was designed to be easily replicated across the country. Through mailings and social media, the Center spread the word about the changing screening technology and the Center’s services to healthcare providers and rabbis in the Chicago area and did targeted outreach to medical professionals at medical conferences. The Center also developed a series of outreach and education "Pop-Up" events and spread the word about the new web-based education and screening program. Click here to read more on this effort.
Location: Metropolitan Chicago
3. Gallaudet University
Program Name: Enhancing Cancer Genetic Education Bilingual Materials and Broadening Outreach Efforts in the United States Deaf Community
Description of Program: The goal of this project was to increase accessibility to family health history and genetics education for the Deaf community, a cultural and linguistic minority group that is geographically scattered nationwide. Through the Impact Award, Gallaudet expanded their current project efforts to increase support and accessibility for the target population, expanding upon already developed materials and incorporating active outreach to Deaf individuals and high school educators who work with this particiular underserved population. Project efforts focused on increasing awareness of the importance of family health history with the goal of more effective health intervention and efficient healthcare. The project developed accessible educational booklets on cancer genetics and families, as well as, several teaching modules hosted on aslcancergenetics.org.
Location: Washington, DC
4. The Hali Project
Program Name: Medical Home and Family Partnerships Project
Description of Program: The goal of this project was to provide connection and support for families who have children with genetic or other chronic health conditions. With funding from an Impact Award, they expanded the existing Parent Partner program and increased the number of practices and hours that Partner Partners are available. As a result, a greater number of families across the state of Wyoming have access to a Parent Partner who can support them while they are trying to find a diagnosis for their child, and point them in the right direction for services following a diagnosis. With more consistent follow-up between visits, Partners will be able to identify barriers families may face in caring for their children and work to remove them. Anticipated Outcomes (based upon current evaluation results) include: less time needed from physicians for visits; greater satisfaction reported by parents about coordination of care; and, greater satisfaction about support received.
Location: Cheyenne, WY
5. Michigan Public Health Institute
Program Name: Care Coordination: Empowering Families
Description of Program: This project expanded upon the existing Care Coordination: Empowering Families curriculum created by the Region 4 Midwest Genetics Collaborative. The curriculum focuses on improving care coordination for families of children with genetic conditions. They utilized both existing and new partnerships to extend the reach of the Care Coordination: Empowering Families curriculum by providing the opportunity for each state in the region to train two facilitators. By using this train-the-trainer model, newly trained facilitators in each state will increase the number of parents who are trained and gain enhanced skills and capacity to work with their child’s multiple providers.
Location: Okemos, MI
6. Nemours A.I. duPont Hospital for Children
Program Name: Transition video series for young adults with special healthcare needs
Description of Program: The goal of this program was to expand on their existing transition video series for youth and young adults with special healthcare needs and their families. The videos focus on providing targeted information for young adults with the goal of helping them become better-empowered, self-determined adults. As part of this Impact Award, two additional videos were developed and shared broadly with partners working with and for young adults. The two videos, "Living with a Genetic Condition: Planning For Your Future" and "Becoming An Adult: Family Planning and Genetics" can be found on the Nemours YouTube Channel. The videos help facilitate discussions with young adults and their families as they begin to plan for their adulthood, serving as a catalyst to engage young adults in conversations with their health care providers. As a result young adults with special healthcare needs and/or genetic conditions will be better suited to make informed choices as they begin to explore adulthood and have better knowledge of how to utilize genetic counseling and screening services.
Location: Wilmington, DE
7. University of Wisconsin-Madison
Program Name: Genetics Education and Outreach to Amish Communities in Northwestern Wisconsin
Description of Program: This Impact Award expanded upon an existing education project called the “Amish Project,” funded by the Wisconsin Partnership program. The program has three goals: 1. To expand newborn blood, hearing and pulse oximeter screening for all Amish infants in an area of Wisconsin with high rates of unscreened infants, 2. To assure communication and follow-up care through establishment of outreach clinics and community engagement, and 3. To administer a community survey to ascertain Wisconsin Plain clothes population disease frequencies and needs assessment. Activities will be expanded to additional counties in Northwestern Wisconsin, where there is also a high prevalence of infants born in Plain clothes communities and low rates of newborn screening.
Location: Madison, WI