Baby's First Test March Newborn Screening Newsletter                                         View this email in your browser
Monthly Newsletter
March 2017, Issue #40

Join Baby's First Test for Education and Engagement Summit
Registration Now Available

Baby's First Test is hosting a two-day education and engagement summit on newborn screening June 5 - 6, 2017 in Washington, DC. Click here for more information about the summit, including location and audience for the summit. Registration for the summit is free, but spots are limited. A draft agenda will be available on by March 31st. If you have questions about the summit, please email Jackie Seisman at

Goals of the Summit:
  • Identify and evaluate best practices that improve family and healthcare provider understanding of the newborn screening system
  • Identify best practices that increase family and healthcare provider involvement in the newborn screening system
  • Evaluate family and health care provider involvement in the newborn screening system
Register Today
Thank You to EHDI, AMCHP, and ACMG!
Baby's First Test Hits the Road
It’s been a busy few months! In February and March, the Baby’s First Test team attended and exhibited at several conferences, including:
  • Early Hearing Detection and Intervention (EHDI) Annual Meeting in Atlanta, GA
  • Association of Maternal & Child Health Programs (AMCHP) Annual Conference in Kansas City, MO
  • American College of Medical Genetics and Genomics (ACMG) Annual Meeting in Phoenix, AZ
During these meetings, our team shared educational resources and engaged with families and professionals across a diverse range of clinical and programmatic specialties. The Baby's First Test team also participated in sessions and delivered a poster presentation at ACMG on scaling Connecting the Dots, a newborn screening educational curriculum for nurses in neonatal intensive care units (NICUs), birthing hospitals, well-baby nurseries, public health departments and NBS state laboratories.

Thank you to everyone who stopped by our booth, and to EHDI, AMCHP, and ACMG for fantastic conferences!
Resource of the Month 
Newborn Screening Public Square:
Education Needs for Critical Congenital Heart Disease

The Newborn Screening (NBS) Public Square is an open space dedicated to conversations around newborn screening. The NBS Public Square is not just a forum – it’s a commitment to new ideas, knowledge sharing, and bringing together a range of communities and experiences within newborn screening to improve education and awareness. This month's public square focuses on educational needs for Critical Congenital Heart Disease (CCHD) screening and follow-up. Join the conversation! Comments will be closed on April 14, 2017.
Join the Conversation

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Community Corner

April is National Minority Health Month 
Every April, the U.S Department of Health and Human Services (HHS) Office of Minority Health (OMH) partners with various organizations to raise awareness about efforts across sectors to address the factors known as the social determinants of health – environmental, social, and economic conditions that impact health. The theme for the 2017 National Minority Health Month is Bridging Health Equities Across Communities. Check out OMH's page for tools, resources, and information on how to get involved in your community.

Genetic Alliance 30th Anniversary Conference & Celebration
On March 9-10, 2017, Genetic Alliance celebrated its 30th anniversary at the Co-Creating a Healthy Future conference. Together, attendees celebrated successes, examined failures, and most importantly, planned for the future over two days of collaborative visioning. Click here to view photos from the conference and to read what participants had to say about the experience.

2017 NSGC Annual Conference Call for Abstracts Now Open
The National Society of Genetic Counselors (NSGC) is now accepting abstracts for the upcoming 36th NSGC Annual Conference. Authors are encouraged to submit abstracts that fall under the categories of original research or case report. Abstracts are due by May 4, 2017 at 11:59pm CT. For submission guidelines and instructions, click here.

APHL Accepting Nominations for NBS Awards
The Association of Public Health Laboratories (APHL) is now accepting nominations for several awards that recognize individuals who have made a substantial impact on the newborn screening field: George Cunningham Visionary Award, Harry Hannon Laboratory Improvement Award, and 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.

Introducing the PCORnet Commons

Are you interested in partnering and resource sharing with clinical researchers? The PCORnet Commons is a platform developed with the goal of providing opportunities to increase collaboration, efficiency, and people-centeredness in research. This digital space is a place to exchange resources, engage in dialogue, and learn from others. To learn more about the Commons, you can explore the following resources: Overview presentation | Infographic. Email Joanna Ball ( with any questions.
Scholarly Article of the Month
Newborn Screening for Krabbe Disease and Other
Lysosomal Storage Disorders: Broad Lessons Learned

Read More
Stay Connected

Job Opportunities

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

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

Medical Technologist III
Texas Department of State Health Services
Austin, TX - To learn more, click here.

CLS Laboratory Supervisor - Newborn Screening
Community Regional Medical Center, Newborn and Prenatal (NAPS) Lab
Fresno, CA - To learn more, click here.
Statewide Coordinator, Newborn Screening
Nevada State Public Health Laboratory
Nevada - To learn more, click here.

Recorded Webinars

Cystic Fibrosis Timeliness QI Webinar

Association of Public Health Laboratories (APHL)
March 8, 2017
To watch, click here.

Short Term Follow-Up Webinar
Association of Public Health Laboratories (APHL)
March 13, 2017
To watch, click here.

NewSTEPs 360 All-Awardee Webinar
Association of Public Health Laboratories (APHL)

March 16, 2017
To watch, click here.

CCHD Technical Assistance Webinar
Association of Public Health Laboratories (APHL)

March 24, 2017
To watch, click here.

Upcoming Meetings

Annual National Healthy Start Association Spring Conference
National Healthy Start Association
Monday, April 3 - Wednesday, April 5, 2017
Washington, DC
For more information, click here.

NEGC Annual Meeting 2017
New England Genetics Collaborative (NEGC)
Thursday, April 6 - Friday, April 7, 2017
Portsmouth, NH
For more information, click here.

MSGRC Annual Meeting 2017
Mountain States Genetics Regional Collaborative (MSGRC)
Thursday, April 20 - Saturday, April 22, 2017
Salt Lake City, UT
For more information, click here.

ACHDNC Quarterly Meeting
Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)
Thursday, May 11 - Friday, May 12, 2017
Washington, DC
For more information, click here.

NBSTRN Network Meeting 2017
Newborn Screening Translational Research Network (NBSTRN)
Thursday, June 1 - Friday, June 2, 2017
Washington, DC
Registration and further information available soon.

Beyond the Bloodspot: Education and Engagement Summit
Baby's First Test
Monday, June 5 - Tuesday, June 6, 2017
Washington, DC
For more information and to register, click here.
 Doctors Urge More Exercise for Pregnant Women
Expecting Health Monthly Roundup
Doctors No Longer Rush to Cut the Umbilical Cord
Funding Opportunities

Biomedical and Behavioral Research Innovations to Ensure Equity (BRITE) in Maternal and Child Health (R15)
Deadline: Friday, July 7, 2017

For more details, click here.

Innovative Therapies and Tools for Screenable Disorders in Newborns (R21)
Deadline: Thursday, September 7, 2017
For more details, click here.

To view (R01) (R03), click here and here.

Natural History of Disorders Identifiable by Screening of Newborns (R01)
Deadline: Wednesday, May 8, 2019
For more details, click here.
Wrapping Up National Nutrition Month
March is National Nutrition Month! In March, Baby's First Test celebrated National Nutrition Month by sharing nutritional tools tailored to kids with special dietary needs, including those affected by newborn screening conditions like phenylketonuria (PKU) and cystic fibrosis (CF). 

The Academy of Nutrition and Dietician's website helps families plan healthy, balanced meals for their unique needs. Their various resources includes a tool to locate Registered Dietitian Nutritionists, professionals who provide timely, accurate and science-based nutrition information, in your area. To learn more about National Nutrition Month, click here.

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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