Expecting Health

11/21/2022

There’s still time this month to thank a family caregiver you know for all that they do!

10/27/2022

You may be hearing more about respiratory syncytial virus (RSV) in recent weeks.

Do you know the signs of RSV? According to the National Coalition for Infant Health, this highly-contagious seasonal virus is the leading cause of hospitalization for all infants under the age of one. Learn more at https://infanthealth.org/rsv-awareness.

10/13/2022

If you will be attending the 2022 Bootcamp (co-hosted by Baby's First Test and EveryLife Foundation for Rare Diseases) and/or the Association of Public Health Laboratories 2022 Newborn Screening Symposium, we want to connect with you! This schedule shows where you can find our team during each event. See you soon!

10/12/2022

We invite you to watch “At the Heart of Newborn Screening: Families Making Change,” a new video series featuring some of our Ambassadors who share their stories, discuss the changes they’d like to see in the system, and much more! https://bit.ly/3yzsnw1

10/12/2022

Did you miss this fireside chat with our Associate Director of Programs and genetic counselor, Marianna Raia, and Society for Women's Health Research about prenatal genetic screening? You can watch the entire conversation online now!
https://t.co/CazqDB8VrE

10/07/2022

We are thrilled to share our report on family engagement in genetics delivery system. This really is the foundation of our next round of work to define, evaluate, and leverage approaches to mutually beneficial family engagement. Special thanks to Molly Chambers Martzke for leading this effort.

Being aware of the barriers that prevent access to quality genetic services and understanding what meaningful engagement entails can lead to improved care for families navigating the genetics healthcare delivery system. Read more in our family engagement report! https://bit.ly/3fP6ouH

09/22/2022

This past Tuesday, we had a great, informative conversation with our Navigate Newborn Screening Ambassadors. These parents shared their stories and what they hope for the future of newborn screening. Click this link to watch it today: https://youtu.be/00jdZy-PFjw

Our Navigate Newborn Screening Ambassadors discuss their newborn screening journey, how they are navigating the newborn screening system, and their experienc...

09/20/2022

It’s not too late to register for today’s webinar featuring our amazing Navigate Ambassadors, who will share their journey and experience in our ambassador program. Register now so you don’t miss out! See you at 3pm.

Join Expecting Health on Tuesday, September 20th, from 3-4 PM EST, for a casual conversation with our amazing Navigate Newborn Screening Ambassadors as they discuss their experience in the Expecting Health Ambassador Program, their newborn screening journey, and how they are navigating the newborn s...

08/12/2022

Know of good work happening in . Let us know through our GRACE Award application. Today is the last day.

Making your mark in the newborn screening system? Today's the last day to apply for our 2022 Newborn Screening Generating Real Action by Cultivating Engagement (GRACE) Award! Click the link below to submit your application by 5:00 PM EST.
https://forms.gle/R1feHSgHjhTrzjce6

08/04/2022

Newborn Screening Month is just around the corner. We are thrilled to keep our tradition going of raising awareness and highlighting the work of families and partners. Stay tuned!

Newborn Screening Awareness Month is quickly approaching! Stay tuned for more information and resources from Baby’s First Test.

07/12/2022

Grab your coffee, tea, or favorite beverage and join us tomorrow morning for an engaging discussion about how to navigate the formula shortage crisis. Learn more and register for the event here: https://us02web.zoom.us/meeting/register/tZUuduqvpzkqE9bXGSQ3RIlpru6VSXQdtt68

05/31/2022

Join our National Genetics Education and Family Support Center with our partners Hands & Voices and Parent to Parent USA today at 2pm as we share information about supporting families virtually. Thank you for the opportunity AMCHP

Need some fresh ideas for supporting families virtually? Join us on May 31 at 2 pm MT for a (virtual) conversation led by Hands & Voices and with Expecting Health and Parent to Parent USA, as a series of three sessions sponsored by AMCHP. Register: https://bit.ly/3w8QPnh

03/02/2022

A great organization has a wonderful opportunity to help elevate the voices on moms. Check it out! Mom Congress

Mom Congress is hiring a Program Director!

Mom Congress, a project of 2020 Mom, is a national mothers’ rights membership organization that is addressing the most pressing policy issues impacting motherhood, including what we call “the motherload”—the stress that U.S. mothers carry (which also impact their children), at higher rates than other developed countries, and represent greater burdens to communities of color.

Reporting to the 2020 Mom Executive Director, the Mom Congress Program Director will be responsible for the operational success of Mom Congress, including management and development of membership, digital content, webinars/trainings, and the annual in-person event.

Learn more and apply: http://ow.ly/WHR650I8lke

01/11/2022

Join us on Wednesday, January 19th at 2pm ET for an engaging and candid discussion with two of our outstanding family leaders on the importance of inclusion and why it is essential to driving change and making improvements to our health systems.

https://us02web.zoom.us/meeting/register/tZwpdOGqrDkoGtGBHk-4VZUjOsG4u5xYYfKS

Meet our panelists:
Deepa Srinivasavaradan | SPAN Parent Advocacy Network, Inc. | Family Center Work Group on Inclusion and Community of Practice for Diversity, Equity, and Inclusion
Twaina Williams | Parent Leader | Navigate Newborn Screening Ambassador Program

This event will be an opportunity for you to learn more about what an inclusive health system looks like, why committing to inclusion matters, and what actions you can take to actively create opportunities for inclusion in your work and life.

National Genetics Education and Family Support Center

11/04/2021

We are wishing all of our a very happy . A special shout out to the two on our team, Marianna and Amy, who work tirelessly to support and educate patients and families. From their expertise in reproductive health to , we are so lucky to have them on our team to support our work in centering family experiences and empowering families to make the right healthcare decisions for them. Learn more about what being a genetic counselor means to them!

10/06/2021

We're excited to be celebrating with a candid discussion with family leaders about word choice and language in the genetics healthcare delivery system. Join our core program, National Genetics Education and Family Support Center, next Thurs at 1pm ET to learn what to say, how to say it, and why it matters.

https://bit.ly/3AGntwj

Join us on Thursday, October 14th at 1pm ET for an engaging and candid discussion on the importance of word choice and why language matters in the genetics healthcare delivery system! We'll be joined by three family leaders, who all have different experiences and perspectives, about this important topic. Whether you’re a provider interested in gaining better insight into family needs or a parent who wants to share their own experiences, this is a session on how language can impact a family’s experience through a genetics journey. Learn what to say, how to say it, and why this all matters. Register today: https://bit.ly/3AGntwj

09/24/2021

Our programs are driven by family stories like Jessica's. Read Jessica's full story on Baby's First Test and be sure to join our discussion with Jessica on next Wednesday at 12pm ET, as we talk more about how families can stay engaged in the system.

You don't want to miss it! Join us and register today: https://bit.ly/3AGntwj

"The words I’ll never forget were, "Your son tested positive for SMA on his newborn screening and without treatment most babies do not live past 8-18 months." I just sat there in disbelief... There are currently 3 FDA approved treatments for SMA - we chose the world's one-time most expensive 2.1 million dollar infusion that took an hour to enter the body. Waylon has came such a long way and we continue to see progress daily, but our future is still so unknown. Treatments are currently changing the natural history of SMA and newborn screening is making it possible for babies with this disease to receive treatment prior to showing any symptoms, in turn meeting milestones like never before, which to me is breathtaking." -Jessica B., mother of Waylon

Read more of what Jessica shared about her family's journey with and here: https://bit.ly/3u9bHrS