The Legacy of Angels Foundation (TLOAF) for Krabbe Disease, Cystic Fibrosis, and Newborn Screening

In this episode, we welcome Stacy L. Pike-Langenfeld to the Newborn Screening SPOTlight. For many years, Stacy and her family have championed newborn screening research in profound ways through their foundation, called The Legacy of Angels Foundation. Stacy is currently the Executive Director of the foundation which was established in 2008 by Stacy’s parents, Paul and the late-Sue Rosenau. The Foundation helps to advance research by bringing world experts together to discover innovations in screening, diagnosis, treatment, and life-long care. Stacy is also the President and co-founder of KrabbeConnect, which is focused on engaging the patient-care model between patients, patient advocacy groups, clinicians, researchers, industry, and government. Stacy will share her story on how her family story intertwined with rare disease research and newborn screening.  She will also highlight annual meetings and discuss ways that you can help advance NBS research. Be inspired by their mission to increase awareness and access to rare disease research.     Podcast Interview Questions with Stacy Pike-Langenfeld:   1. You are the Executive Director of The Legacy of Angels Foundation.  Can you tell our audience how The Legacy of Angels Foundation came to be?     2. Your entire family has played important roles in founding and operating The Legacy of Angels Foundation for many years. Your mother’s efforts are especially well known in the newborn screening and rare disease communities. How does her memory guide your efforts today?    3. How have your efforts changed over the years?    4. Your team is growing! Do you have advice for patients, parents, families, and advocates who would like to start similar efforts related to conditions that have impacted their families?    5. Stacy, you are also the President and Co-Founder of KrabbeConnect. What is KrabbeConnect? Could you share with our listeners how these two organizations, The Legacy of Angels Foundation and KrabbeConnect work together?   6. TLOAF filed for Krabbe disease to be added to the MN NBS panel in Dec 2021 and a vote will likely occur in June of 2022. Newborn screening for Krabbe is also under review on a national level. Could you tell us a little bit about how submitting to a state advisory panel differs from a submission to the federal advisory board, which recommends screening for all states, territories and the District of Columbia?   7. Do you have advice for other groups interested in submitting their conditions for review? Any tips on the best approach – state or national?   8. The work of The Legacy of Angels Foundation has always informed the work of the Newborn Screening Translational Research Network or NBSTRN. Are there activities and efforts that you’d like to see NBSTRN facilitate as you work towards new goals?   9. Krabbe Translational Research Network is hosting its annual meeting on March 16-18, 2022? Could you share the agenda with our listeners? If our listeners are listening to this podcast after the meeting, is there a way for them to learn more?    10. What does NBS research mean to you?   Learn more about The Legacy of Angels Foundation (TLOAF) at https://www.tloaf.org   Become a member of the Newborn Screening Translational Research Network (NBSTRN) to help advance newborn screening research. Visit NBSTRN at www.nbstrn.org