MLD Foundation

10/12/2026

Made it to New Orleans for the APHL NBS Symposium. Happy 75 years APHL!

10/12/2026

Made it to New Orleans and the APHL Symposium. Happy 75 years APHL!🎁

10/11/2026

Had a great time yesterday celebrating Axel with his Axel Strong family!❤️

10/10/2026

Teryn and Dean are in Illinois to party and celebrate Axel’s life (Axel Strong)with family and friends on our way to tommorrow.

10/05/2026

Believing for Bryleigh thank you for an incredible awesome time last night and through the years! Bryleigh’s legacy lives on! Love you!❤️

10/04/2026

Believing for Bryleigh is the best! Thank you for all you’ve done over the years!❤️

10/04/2026

Can’t wait to be a part of the final B4B benefit fundraiser! It’s been 14 years of partnering and friendship! 14 years of helping MLD and leukodystrophy families and foundations. Kaprice Reinhard Shullanberger and Corbin Shullanberger have poured their life into B4B and helping others! Bryleigh’s legacy lives on! Can’t wait to share in the day with all those who have supported this great organization. ❤️

The day has finally arrived! 🎉

Join us TODAY at the Wurstfest Grounds for our 14th and Final Believing For Bryleigh Benefit Concert. Bring your friends and family for an incredible evening of live music, food, drink, and live/silent auctions, all supporting MLD families. Let’s finish this story strong!

Event Details:
📍 Where: Wurstfest Grounds | New Braunfels, TX
⏰ When: Today | Gates open at 3:00 PM (Music until 8:30 PM)
🎟️ Tickets: Available at the gate or at https://believe4b.org Let’s fill the grounds and finish this journey strong! See you there!

10/02/2026

MLD Foundation was there when it all started 14 years ago and we are forever grateful for our partnership with Believing for Bryleigh! Believing for Bryleigh has made it possible for MLD families to attend the annual MLD Family Conference through scholarships to connect with each other for support. B4B has enabled our foundation to transfer needed equipment between MLD families that no longer need things like a p-pod chair to another MLD family. They have supported MLD Foundation in our MLD Newborn Screening efforts, our education and policy efforts and they have always helped families that we have referred to them. It’s been a beautiful partnership and friendship! We will always cherish our time with Bryleigh and the memories through the years! Bryleigh’s legacy will continue long after the last song this Sunday. Don’t miss out on this final B4B event!! 🩷

The final countdown is here, and the goal remains critical: support MLD families. 💕

As we head into our 14th and Final Benefit Concert, every ticket you buy goes directly toward easing the load for families navigating Leukodystrophies.

This funding ensures necessary grants are distributed, specialized medical equipment is accessed, and travel for critical treatments is covered.

This community has always been the engine, and we can't wait to finish this strong with you. 🎀

09/25/2026

MLD Foundation is in Washington, DC. Dean's advocating on the Hill while Teryn is at the NBS Bootcamp put on by RARE Foundation and Baby's First Step. The day became even more eventful when the rare community moved one crucial step closer to ensuring that every baby, in every state, is screened for every RUSP condition! Today, Congressman Nick Langworthy and Congresswoman Kim Schrier introduced the Act in Congress - landmark legislation providing a one-time surge in funding to implement all RUSP-approved newborn screenings in all 50 states.

This legislation takes a unique approach to federal newborn screening funding and marks a major milestone for the Newborns and the broader newborn screening advocacy community. The movement to save as many babies as possible with serious, rare, but treatable conditions from lifelong disability or early death has reached a defining turning point.

Thank you to our congressional champions for their bipartisan leadership on this legislation, especially during September’s Month - a time to raise awareness for lifesaving early detection.
🗳️ Learn more about the new bill: https://bit.ly/4hhZeeg and how to take action: https://surgetosave.org/act-now/

08/11/2026

Excited to see this news today! A pathway has been restored for conditions to be added to the federal recommended universal screening panel (RUSP)

HRSA Modernizes National Newborn Screening Review Process to Speed Up Evaluation of Emerging Conditions

U.S. Department of Health and Human Services
Health Resources and Services Administration
FOR IMMEDIATE RELEASE
August 11, 2026
HRSA NEWS ROOM
newsroom.hrsa.gov
Contact: HRSA PRESS OFFICE
Phone: 301-443-7070
Media Inquiries: Submit via this form
New framework will streamline evidence review and strengthen national newborn screening recommendations
The Health Resources and Services Administration (HRSA) today announced a modernized framework for addressing national newborn screening topics including evaluating conditions to include in the Recommended Uniform Screening Panel (RUSP), the national guideline that informs newborn screening programs across the country.
The new approach is designed to build efficiency, increase transparency, and better respond to scientific advances.
“As a father and grandfather, I know there is nothing more important than giving every child the healthiest possible start in life,” said HRSA Administrator Tom Engels. “Newborn screening is one of the nation’s most successful public health programs, helping infants receive life-saving treatment before symptoms appear. This modernized approach will strengthen our ability to keep pace with advances in science while ensuring recommendations continue to be grounded in the best available evidence.”
Each year, states and territories screen more than 3.6 million newborns for serious heritable conditions that can lead to disability or death if left untreated. Nearly all state newborn screening programs use the RUSP to determine which conditions to include in their screening panels.
HRSA is providing supplemental funding to the Association of Public Health Laboratories through the National Center for Newborn Screening Systems Excellence (NBS Excel). The organization will convene a new stakeholder workgroup and develop findings and recommendations for HRSA’s review and consideration.
In addition to evaluating candidate conditions, the workgroup will address emerging issues affecting newborn screening nationwide. Meetings will be open to the public, and membership opportunities will be announced publicly. HRSA will continue to support independent evidence reviews and consider stakeholder input before making recommendations to the Secretary of Health and Human Services regarding updates to the RUSP.
The modernization effort reflects HRSA’s commitment to ensuring that the nation’s newborn screening system keeps pace with advances in science while supporting timely, evidence-based recommendations that improve health outcomes for children and families.
Read the Federal Register Notice.

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