EARLY HEARING DETECTION AND INTERVENTION VIRTUAL CONFERENCE
MARCH 2-5, 2021
(Virtually the same conference, without elevators, airplane tickets, or hotel room keys)
3/07/2023 | 3:45 PM - 4:15 PM | Engaging Family Leaders in the Newborn Screening (NBS) System | DECC 207/208
Engaging Family Leaders in the Newborn Screening (NBS) System
While newborn screening is a widely known process to many state and national NBS stakeholders, lived experiences and family insights are often missing from the key decision points and system change. Family leaders are knowledgeable about the newborn screening system, understand the complexities within the system and are able to share their lived experiences to improve care for other families. Systems can improve through coordinated effort between NBS family leaders and NBS systems stakeholders.
The Newborn Screening Family Education Program is dedicated to developing opportunities for families to learn about newborn screening as well as training and educational resources that build confidence for families to become leaders in the newborn screening system.
In autumn of 2021, The Newborn Screening Family Education Program established the Navigate Newborn Screening Ambassador program, in which we recruited 12 family leaders representing 10 different states to participate in a 12-month program focused on three key goals:
1. To build community by connecting with other families and developing relationships with local, regional and national newborn screening stakeholders.
2. To develop leadership and advocacy skills through training, practice and application of skills.
3. To increase awareness of the importance and value of newborn screening by sharing stories within your community.
Through a mixture of quarterly meetings, online and live trainings, as well as collaborative learning, this program established opportunities for families to integrate into the newborn screening system. Ambassadors connected with multiple stakeholders, shared their stories through social media, and supported the development of a video storytelling campaign to help raise awareness for newborn screening at the local, state and national levels.
In this session, we will discuss the strategies required to develop, recruit, and facilitate a national family leadership training program that is rooted in local impact, aimed to improve confidence and agency for families to serve as leaders in the NBS process.
- Describe the measurable outcomes of family leadership training including baseline measures of confidence and knowledge in a group of family leaders.
- Share resources to implement family leadership training at the national level.
- Identify opportunities for family leaders to engage with the NBS system at the local, state and national levels.
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Presenters/Authors
Marianna Raia
(), Expecting Health, MRAIA@EXPECTINGHEALTH.ORG;
Marianna Raia is the Associate Director of Programs at Expecting Health and the program manager for the HRSA funded Newborn Screening Family Education Program. With nearly 15 years of experience as a genetic counselor working directly with families, providers, laboratories and advocacy groups in the rare disease community, Marianna is dedicated to helping patients, providers, and families understand how genetic information can empower you to make decisions about your health and the health of your family. She is committed to improving the experiences of families on their newborn screening and health care journeys.
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Michelle John
(), Vermont Hands & Voices, michelle.john@hotmail.com ;
Michelle John is the president of the Vermont chapter of Hands & Voices. She holds two bachelor's degrees from Hofstra University in psychology and sociology, and a master's degree in community counseling and psychology with a specialization in addictions counseling from Springfield College. She is also a Certified End of Life Doula through the University of Vermont. While proud of these accomplishments, she's just as quick to share life sent her in a divergent direction; her highest education comes from being a stay-at-home parent of 3 children aged 9, 7, and 4. She is all things medical, coordination and physical care to her 9-year-old DeafBlind+ child who has a variety of medical complexities, and willing teacher to those with questions. In her middle of the night spare time, she enjoys reading autobiographies, watching reality television, and pretending to get some sleep.
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