|
|
|
|
Monthly Newsletter
June 2017, Issue #43
|
|
Highlights: Beyond the Bloodspot Education and Engagement Summit
|
|
The 2017 Beyond the Bloodspot: Education and Engagement Summit was held on June 5-6, 2017 in Washington, DC. You can find the final agenda here. Thank you to everyone who participated at the summit! Your thoughtfulness, energy, and commitment to education helped create an engaging and generative meeting!
|
|
Resource of the Month
Moving Toward Best Practices in Newborn Screening Education & Engagement
|
|
Welcome, Susan and Taylor!
Expecting Health Interns Join Us For the Summer
|
|
Meet Susan Kourtis and Taylor Puhl, our undergraduate interns who will be working on Genetic Alliance's newest initiative, Expecting Health, this summer. As part of Expecting Health, they will also be assisting with a range of projects for Baby's First Test.
|
|
|
Susan: I'm a rising senior at Boston College, majoring in Theology and minoring in Education. This past fall, I took a class that focused on health advocacy and education, which sparked an interest in public health and led me to the internship at Genetic Alliance. I am particularly interested in maternal and child health, especially the systems that provide care and services to mothers, infants and children, and communities.
|
|
|
Taylor: I'm a student at the University of Virginia and will be a senior (fourth year in UVA terms) this coming fall. I'm majoring in Global Public Health with a minor in Religious Studies, and ultimately hope to get a Masters of Public Health. I just spent a semester abroad in Zambia and Botswana and am particularly passionate about equal access to healthcare (specifically for mothers and their children), and the systems and organizations that both prevent and support this goal.
|
|
|
Recap of National Newborn Screening Meeting on New Disorders
|
|
Baby's First Test attended the National Newborn Screening on New Disorders Meeting on June 21 - 23 in Bethesda, MD. The meeting was hosted by the Association of Public Health Laboratories' (APHL) NewSTEPs program, and convened 40 state newborn screening programs including the 11 recipients of the New Disorders Implementation Awards, which are funded through a two-year cooperative agreement with HRSA. State newborn screening laboratory awardees receive financial support, training, and technical assistance to expand screening capacity in their states for X-linked adrenoleukodystrophy (X-ALD), mucopolysaccharidosis type 1 (MPS-1), and Pompe disease, the three latest additions to the Recommended Uniform Screening Panel (RUSP).
At the meeting, presentations and discussion covered a range of topics including screening stories, clinical considerations, policy, short- and long-term follow-up, and challenges in implementation for X-ALD, MPS-1, and Pompe. Additionally, the Baby's First Test team delivered a presentation on the importance of newborn screening education for families about the newest RUSP conditions. The presentation incorporated insights from parent work groups on the new conditions, as well as takeaways from the Beyond the Bloodspot: Education and Engagement Summit. Thank you NewSTEPs for hosting a fantastic meeting and for inviting us to present!
|
|
|
Thank You, AWHONN!
On June 26 - 28, the Baby's First Test team attended the Association of Women's Health, Obstetric, and Neonatal Nurses' (AWHONN) Annual Meeting in New Orleans, LA. At the meeting, our team shared educational resources at our booth and engaged health professionals from across the country. In partnership with NewSTEPs 360, we also conducted a focus group to learn about nurses' perception of newborn screening procedures and how best to improve communication between nursery personnel and state programs around timeliness in newborn screening. Thanks to AWHONN for another great conference!
|
|
|
Looking Ahead: What's Coming Up in July
|
|
|
National Council of La Raza Health Summit
The Baby's First Test team will be attending the National Council of La Raza's (NCLR) Conference and Health Summit in Phoenix, AZ on July 8 - 11. We look forward to the opportunity to participate in workshops, town squares, and panel discussions about current issues impacting the health of Hispanic/Latino communities, and to share our bilingual newborn screening educational resources.
|
|
How States & Parent Advocates Work Together
Baby's First Test will be hosting a webinar on how state newborn screening (NBS) programs can effectively collaborate with and support families on advocacy efforts. On the webinar, the Minnesota Newborn Screening Program will present the work they've done in partnering with a Minnesota family. The webinar is scheduled for Tuesday, July 25, 2017 at 1pm ET. Register here. We hope you'll join us!
|
|
Community Corner
400,000+ Views on TED.com for CEO Sharon Terry's Talk
Sharon Terry, a former chaplain and stay-at-home mom and now President and CEO of Genetic Alliance, took the medical research world by storm when her two young children were diagnosed with a rare genetic disorder called pseudoxanthoma elasticum (PXE). In her TEDMED talk, Sharon Terry explains how she and her husband became citizen scientists, working midnight shifts at the lab to find the gene behind PXE and establishing mandates that require researchers to share biological samples and work together. Watch Sharon Terry's talk here.
North Carolina Selected as Host Lab for Ronald H. Laessig Fellowship
The North Carolina Newborn Screening Laboratory has been selected as the host site for the Ronald H. Laessig Memorial Newborn Screening Fellowship program, sponsored by the Association of Public Health Laboratories (APHL) and the Centers for Disease Control and Prevention (CDC). Fellows receive a high quality training experience to prepare them for careers in newborn screening and/or genetics research. To learn more about the fellowship, click here.
|
|
Scholarly Article of the Month
Parental Experiences of Raising a Child with Medium Chain Acyl-CoA Dehydrogenase Deficiency
|
|
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.
CLS Laboratory Supervisor - Newborn Screening
Community Regional Medical Center, Newborn and Prenatal (NAPS) Lab
Fresno, CA - To learn more, click here.
Newborn Screening Office Chief
Arizona Dept. of Health Services
Phoenix, AZ - To learn more, click here.
Program Assistant II
New Hampshire Dept. of Health and Human Services
Concord, NH - To learn more, click here.
Upcoming Webinars
Fatherhood Engagement
ZERO TO THREE
Wednesday, July 12, 2017 at 1:00 PM - 2:00 PM ET
For more information and to register, click here.
How States & Parent Advocates Work Together
Baby's First Test
Tuesday, July 25, 2017 at 1:00 PM - 2:00 PM ET
For more information and to register, click here.
Upcoming Meetings
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.
SERN/SERGG Annual Meeting
Southeast Regional Genetics Network (SERN) &
Southeastern Regional Genetics Group (SERGG)
Thursday, July 20 - Saturday, July 22, 2017
Asheville, NC
For more information and to register, click here.
APHL Newborn Screening & Genetic Testing Symposium
Association of Public Health Laboratories (APHL)
Sunday, September 10 - Wednesday, September 13, 2017
New Orleans, LA
For more information and to register, click here.
NSGC 36th Annual Conference
National Society of Genetic Counselors (NSGC)
Wednesday, September 13 - Saturday, September 16, 2017
Columbus, OH
For more information and to register, click here.
|
|
|
|
|
|
As Popularity of Baby Boxes Grows, Skeptics Say More Testing Is Needed
|
|
|
|
|
|
The Birth of a Mother
|
|
|
|
|
|
Lead Detected in Baby Food Samples. Pediatricians Say There's No Safe Level
|
|
|
|
|
|
|
|
