Baby's First Test May Newborn Screening Newsletter                                         View this email in your browser
Monthly Newsletter
May 2017, Issue #42
In This Issue:
Can't Attend Baby's First Test's Education and Engagement Summit? Join the Conversation with #NBSsummit!
Baby's First Test is kicking off its education and engagement summit in just a few days! If you're not able to attend the summit on June 5 - 6, you can still follow the highlights on the Baby's First Test Facebook and Twitter pages using the hashtag #NBSsummit. Stay tuned for photos, quotes, and more in next month's newsletter! The final agenda for the summit is now available. To view it, click here.
Engaging Hispanic Families in Newborn Screening
Baby's First Test Convenes Community Leaders in Hispanic Engagement
In late April, Baby's First Test invited representatives from national and local health organizations in the DC area to discuss strategies for engaging Hispanic families in newborn screening. With attendees from Mary's Center, La Clínica del Pueblo, and Family Voices, we explored how to strengthen partnerships in the community, map out achievable goals within existing funding mechanisms, and engage healthcare providers through traditional and nontraditional means. Our team also shared our Spanish-language educational materials and website ( to provide context for our work and gather feedback. Thank you to all who attended for your valuable insights!

Do you have ideas for engaging Hispanic families in newborn screening, or questions about the project? Feel free to reach out to Amelia Mulford at

Newborn Screening Educational Videos for Online Resource Library 
Baby's First Test is partnering with the Colorado School of Public Health (CSPH) in collaboration with the Association of Public Health Laboratories (APHL) through the NewSTEPs 360 project to develop an online resource library for educational videos developed by and for newborn screening (NBS) programs, partners, and stakeholders. The purpose of this library will be to serve as a comprehensive central source to store and/or list existing NBS educational videos pertaining to timeliness in NBS, specimen collection, specimen transit, and the general NBS process with hospital staff and/or parents as the intended audience.
A list of existing videos gathered to-date is can be found here. If you have developed or know of an educational video that isn’t listed that could be included in the library with appropriate permissions, please email Jackie Seisman at Baby’s First Test or Joshua Miller at NewSTEPs 360 and include 1) the name of the video, 2) the URL where the online video can be accessed, 3) a short description on the content of the video, and 4) any instruction on how the video can be accessed if not available to the public. All videos will be catalogued on utilizing our dynamic and interactive Resource Center.
Thank You to ACNM!
On May 22 - 24, the Baby's First Test team attended the American College of Nurse-Midwives' (ACNM) Annual Meeting & Exhibition in Chicago, IL. At the meeting, our team shared educational resources at our booth and engaged midwives from across the country. In partnership with NewSTEPs 360, we also conducted a focus group to learn about nurse-midwives' perception of newborn screening procedures and how best to improve communication between nursery personnel and state programs around timeliness in newborn screening. Thanks to ACNM for a great conference!
Recap of May Advisory Committee on Heritable Disorders in Newborns and Children Meeting
Baby's First Team attended the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) meeting on May 11 - 12. At the meeting, presentations and discussion covered a range of topics including screening implementation for critical congenital heart disease (CCHD) and state approaches to follow-up for out-of-range/borderline results. The Committee also voted to advance spinal muscular atrophy (SMA) to the evidence review phase of the condition nomination process.

Tori Smith, a member of the 2017 Consumer Task Force on Newborn Screening, delivered a powerful public comment before the Committee and attendees. Tori, a mom to seven children through adoption, shared her experience as a foster mother and losing one of her sons due to a congenital heart defect. Highlighting the need for more targeted education and communication around screening, we thank Tori for lending her voice about the importance of improving newborn screening education for all families.
Looking Ahead: What's Coming Up in June
APHL's National New Disorders Meeting
The Baby's First Test team will lead a session on parent education for X-ALD, Pompe, and MPS I, the newest conditions on the Recommended Uniform Screening Panel (RUSP), at the National New Disorders Meeting hosted by the Association of Public Health Laboratories' (APHL) NewSTEPs program on June 21 - 23, 2017. For more information about this meeting, contact Sikha Singh.
Visit Baby's First Test at Booth #751
Attending the Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN)'s convention on June 24 - 28 in New Orleans? Be sure to stop by Baby's First Test's booth (#751) to ask questions, check out our latest newborn screening materials, and learn about our upcoming events and activities. For more information about the convention, click here. We hope to see you in Louisiana!
Resource of the Month
Interactive National Maps

Have you seen Baby's First Test's interactive national maps? We're working with all 50 states, DC, and U.S. territories to keep our maps up-to-date with additions to state panels. See at a glance where each of the 34 core conditions of the Recommended Uniform Screening Panel (RUSP) are being screened for nationwide, including the three newest conditions: X-linked adrenoleukodystrophy (X-ALD), Pompe, and mucopolysaccharidosis type I (MPS I).
View the Maps

Community Corner

Regional Collaboratives Become the Regional Genetics Networks
In June, at the end of their 2012-2017 award period, the Regional Collaboratives (RCs) will relaunch as the Regional Genetics Networks. The National Coordinating Center (NCC) will become the National Coordinating Center for the Regional Genetics Networks and the National Genetics Education and Family Support Center. To learn more about the relaunch and their ongoing work of bring quality genetic and newborn screening services to local communities, click here.

Connecting to Care Workshops for Interpreters
The Cross Cultural Health Care Program (CCHCP) is offering Connecting to Care in Seattle for interpreters working in the healthcare field. Participants will have the opportunity to practice and hone skills in the areas of patient navigation, patient education, and cultural competency. The training provides the opportunity to earn 2.4 IMIA CEUs. There are two options for open enrollment training (June 26 - 28 or September 18 - 20). The open enrollment training is followed by a Training of Trainers course on September 21 - 23. For more information about the course curriculum and how to register, click here.

APHL Newborn Screening Awards Nominations Closing Soon
Don't miss the deadline to submit nominations for the Association of Public Health Laboratories (APHL)'s awards that recognize individuals who have made a substantial impact on the newborn screening field: the George Cunningham Visionary Award, the Harry Hannon Laboratory Improvement Award, and the Judi Tuerck NBS Follow-Up and Education Award. The recipients of these awards will be honored at the Awards Luncheon at APHL's Newborn Screening and Genetic Testing Symposium in September. To submit a nomination, email Jelili Ojodu at by Friday, June 30, 2017.

National Center for Medical Home Implementation Webinar Series
In May and June, the National Center for Medical Home Implementation (NCMHI) is hosting a webinar series to provide pediatric clinicians, Title V programs, family leaders, and other pediatric health professionals with tools, resources, and strategies to strengthen, implement, and measure family and professional partnerships in pediatric settings. Register here for the upcoming webinar "Achieving True Partnership: Integrating Family Engagement in Systems of Care" on June 20.
Scholarly Article of the Month
Newborn Hearing Screenings in Human Immunodeficiency Virus-Exposed Uninfected Infants
Read More
Stay Connected

Job Opportunities

Engagement and Outreach Manager
Genetic Alliance
Washington, DC - To learn more, click here.

Online Engagement & Outreach Assistant
Genetic Alliance
Washington, DC - To learn more, click here.

Public Health and Prevention Specialist I
Texas Dept. of State Health Services
Austin, TX - To learn more, click here.

Newborn Screening Coordinator (Nurse)
Stanford University Dept. of Pediatrics
Menlo Park, CA - To learn more, click here.

MCH Screening and Follow-Up Manager
Maine Dept. of Health and Human Services
Augusta, ME - To learn more, click here.

Internship Opportunity

Intern, Newborn Screening and Genetics
Association of Public Health Laboratories (APHL)
Silver Spring, MD - To learn more, click here.

Upcoming Webinars

Achieving True Partnership: Integrating Family Engagement in Systems of Care
National Center for Medical Home Implementation (NCMHI), American Academy of Pediatrics (AAP)
Tuesday, June 20, 2017 at 1:00 PM - 2:00 PM CT
For more information, click here.

Alpha Thalassemia Newborn Screening in the United States
Association of Public Health Laboratories (APHL)
Thursday, June 29, 2017 at 2:00 PM - 3:00 PM ET
For more information, click here.

Upcoming Meetings

NBSTRN Network Meeting 2017
Newborn Screening Translational Research Network (NBSTRN)
Thursday, June 1 - Friday, June 2, 2017
Washington, DC
For more information and to register, click here.

Beyond the Bloodspot: Education and Engagement Summit
Baby's First Test
Monday, June 5 - Tuesday, June 6, 2017
Washington, DC
For more information, click here.

2017 AWHONN Convention
Association of Women's Health, Obstetric, and Neonatal Nurses (AWHONN)
Saturday, June 24 - Wednesday, June 28, 2017
New Orleans, LA
For more information and to register, click here.

NCLR Annual Conference & Health Summit
National Council of La Raza (NCLR)
Saturday, July 8 - Tuesday, July 11, 2017
Phoenix, AZ
For more information and to register, click here.

SERC/SERGG Annual Meeting
Southeast Regional NBS & Genetics Collaborative (SERC) &
Southeastern Regional Genetics Group (SERGG)
Thursday, July 20 - Saturday, July 22, 2017
Asheville, NC
For more information and to register, click here.
 Focus On Infants During Childbirth Leaves U.S. Moms In Danger
 Brief: Addressing Vaccine Hesitancy to Protect Children and Communities Against Preventable Diseases
Racial and Ethnic Disparities Persist in Sudden Infant Deaths
Funding Opportunity
 Maternal and Child Health Services
Deadline is July 17, 2017
Read More
To view other open newborn screening and maternal-child health funding opportunities, please visit the Funding Opportunities page on Baby's First Test.
Celebrating Mom
Happy Mother's Day! (May 14)
Baby's First Test is always interested in hearing what you like about our monthly newsletter and what could be improved. Feel free to provide feedback via our short survey:

The Newborn Screening Clearinghouse is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under Cooperative Agreement no. U36MC16509 (Quality Assessment of the Newborn Screening System. Total award amount: $2,900,000). This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. 

Copyright © 2017 Genetic Alliance, All rights reserved.
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