In February 2025 we kicked off a Genetic Research Study with Dr. Wendy Chung. This study is made possible by a $50,000 directed gift by NEHI Research Foundation to Boston Children's Hospital. Click the image below to participate in this study. The more participants, the higher our odds of identifying potential genetic mutations that may be related to NEHI.

Thanks to our partnership with Penn Orphan Disease Center we were able to award two grants for NEHI Research totaling $166,000. This is all made possible by families that fundraised and those that participated in our 6th MDBR event in Philadelphia in June 2024. Award recipients are as follows:

​

Dr. Sharon McGrath-Morrow - "Transcriptomic Signatures in NEHI"

​

Dr. James Hagood - "Bronchoalveolar Lavage Fluid-Derived Organoids as Translational Models for NEHI"

Thanks to participation from many in our 4th Million Dollar Bike Ride we were able to team up with Penn Orphan Disease Center and funded a $87,000 grant. Dr. Nadia Nathan of Sorbonne University (France) is leading a study in which patients from the RespiRare network are having whole genome sequencing performed. Children and their parents will be sampled and analyzed. Expected results: Identifying molecular causes or predispositions for NEHI is a crucial step in studying the pathophysiology of the disease. This could highlight new pathways of interest that could allow the development of targeted treatments.

2021: $41,000 - Dr. Katie Krone - Boston Children's Hospital

"High Resolution Ventilation and Perfusion MRI Assessment of Neuroendocrine Cell Hyperplasia of Infancy (NEHI) in Infants and Young Children: Technical Feasibility and Direct Clinical Application."

​

2021: $41,000 - Dr. Adam Gower - University of North Carolina at Chapel Hill School of Medicine

Spatial Transcriptomics to Identify Cellular Alterations in NEHI."

​

2020: $103,000 - Dr. Xin Sun - UC San Diego

"Dissecting the Genetic and Genomic Basis of NEHI."

Click here to see a message from Dr. Xin Sun

​

2020: $50,000 - Dr. Laura Walkup - Cincinati Children's

"Xe gas-exchange MRI to quantify ventilation, diffusion, and perfusion abnormalities in NEHI".

​

2019: $30,000 - Dr. Joseph Shieh - UC San Francisco

"Using novel genomic tools to examine the underpinnings of NEHI. We will also develop educational materials for dissemination. Our goal is to improve clinical care for families with NEHI."

​

2019: $61,000 - Dr. Lisa Young - Children's Hospital of Philadelphia

"Genetic Mechanisms in Neuroendocrine cell Hyperplasia of Infancy (NEHI)"

​

2018: $20,000 Directed Gift - Dr. Lisa Young - Vanderbilt University

Analysis of Genetic Samples