LAM Patient Research and Priorities Survey Provides Key Insights
We are pleased to inform you that the LAM Patient Research Priorities Survey (LAM-PREP), led by Dr. Marina Holz, has been a success. While Dr.
LAM Patients Advocate for Supplemental Oxygen Access Reform During Rare Across America
From August 5-16, LAM patients: Beth Daugherity, Ali DeChristopher, Steph Dreyer, Sarah Poitras, Mary Stojic, Abigail Passeri, Ally Venugopal, Elizabeth Zampino, and Cindy Beasley were
CpG-ODN as novel LAM immunotherapy
Lymphangioleiomyomatosis (LAM) is a rare but serious lung disease mostly affecting women of reproductive age. LAM leads to lung damage through the formation of cysts.
Advocating for Women in Rare Diseases: LAM Foundation’s Call to the FDA Innovation Hub
The LAM Foundation recently issued recommendations for the FDA’s Rare Disease Innovation Hub, urging it to prioritize the unique needs of women affected by rare
Assessing Unsupervised Exercise in Interstitial Lung Disease
Patients with interstitial lung diseases (ILDs), including lymphangioleiomyomatosis (LAM), have unique risks for adverse health events during exercise training outside of a medically supervised setting.
New Automated Method to Segment and Measure Lymphangioleiomyomatosis Lung Cysts in CT Images
This study addresses the cystic lung destruction in Lymphangioleiomyomatosis (LAM). Because LAM may progress over many years, doctors may use pulmonary function tests, exercise tests,
I Am a LAM Patient and Oxygen Advocate. Here’s Why Congress Needs to Pass the SOAR Bill.
Bev Jackson is one of the leading LAM community advocates for passing SOAR (Supplemental Oxygen Access Reform) legislation. Her interview has been edited for length
A Note From Pat Gentile
Greetings! How lucky am I that I get to work with the LAM community again?! Throughout my long professional career, I have never encountered a more
The Latest in LAM Science: Q & A with Kathryn Wikenheiser-Brokamp, PhD
Dr. Wikenheiser-Brokamp of Cincinnati Children’s Hospital Medical Center was awarded an Established Investigator Award in 2022 for her project titled: Identifying Cell-Cell Signaling Driving Pulmonary
A Potential Biomarker and Therapeutic Target for LAM
One of the greatest challenges in caring for patients with lymphangioleiomyomatosis (LAM) is to find better ways to track disease progression, either off or on
Take Action on Oxygen Reform: Call Your Senators and Representatives.
PHONE CALLS TO CONGRESS NEEDED The LAM community has an opportunity to advocate for improved oxygen therapy through a simple phone call to their congressional
New study explores the relationship between mTOR activation and pulmonary hypertension
Lymphangioleiomyomatosis (LAM) is a complex lung disease characterized by cyst formation due to mutations in the TSC1/2 genes, leading to the overactivation of a molecular