Watch our welcome video below to learn more about Leukodystrophy Newborn Screening Action Network, and see how you can get involved.
In our video, we want to introduce you to who we are and our mission. Plus, we want to let you know about all of the amazing resources we have such as:
- US Newborn Screening Map
- Three Pillars of Newborn Screening Advocacy
- Frequently Asked Questions
- Contact Us form
- And so much more!
Our welcome video is presented by Lesa Brackbill, Leukodystrophy Newborn Screening Advocate, whose research contributions have made the LDNBS Action Network possible. Brackbill started working in newborn screening when her daughter Tori was diagnosed with Krabbe Disease. After lobbying for years to expand newborn screening in Pennsylvania, finally at the end of 2020, her efforts came to fruition. A bill was passed that made it mandatory in Pennsylvania to screen for conditions on both the mandatory and supplemental panels. This means that the entire state of PA will screen for Krabbe beginning in May 2021. You can read more about her journey and efforts in our blog post here.
“Within the leukodystrophy community, many of us feel compelled to change the world because our own world has been shattered. But this is often easier said than done. With each state making their own rules, and with science moving faster than bureaucracy, it can often seem too complicated to even try. That’s why we established the Leukodystrophy Newborn Screening Action Network – to make this journey a little easier.” – Lesa Brackbill
Four years after Tori passed away from Krabbe Leukodystrophy, Lesa Brackbill partnered with Cure MLD to create the Leukodystrophy Newborn Screening Action Network. Watch our welcome video below to learn more about what we do and how we hope to change the world!
WELCOME | LDNBS ACTION NETWORK
Please don’t hesitate to contact us at firstname.lastname@example.org with questions or other inquiries.