The LAM Foundation’s 2023 Annual Report

Lymphangioleiomyomatosis (LAM) is a rare lung disease that affects women almost exclusively. LAM is characterized by an abnormal proliferation of smooth muscle cells, predominantly in the lungs, lymphatic system, and kidneys. This abnormal cell growth can result in loss of lung function, accumulation of lymph fluid in the chest and abdomen, and the development of benign tumors in the kidneys. The estimated global prevalence stands at a minimum of 21 cases per million women, with instances documented across various races and in more than sixty countries. On average, women are diagnosed around the age of 35.

In a year of organizational change, The LAM Foundation’s mission was unwavering: to discover better treatments, and ultimately a cure, for LAM. We remain steadfast in supporting leading-edge research and advocacy for all individuals with this disease. In 2023, we funded and launched the LAM Prep survey, specifically designed to glean the issues of the highest priority to patients and recommend projects for funding by our Board of Directors. Patients have described some health needs and research priorities, including supplemental oxygen, holistic wellness, mental health, improving diagnostic methods, and identifying new therapies to treat LAM. Final results and recommendations from the survey are expected in late 2024.

The Foundation remains committed to a breadth of programs for our entire community, including outreach for those who cannot travel, yet who are actively engaged with our online educational activities and support groups.

With the generous support of women with LAM and their families, donors, volunteers, scientists, clinicians, and the broader LAM community, The LAM Foundation pursued new milestones in 2023.

We are sincerely grateful to each and every one of you.

Advancing LAM Research

The LAM Foundation awarded $375,000 to fund three new research projects in 2023.

Grant Awardee Information

Special Grant

Marina Holz, PhD
New York Medical College
LAM Patient Needs Assessment and Research Priorities Survey

Established Investigator Award

Kathryn Wikenheiser-Brokamp, MD, PhD
Cincinnati Children’s Hospital & Medical Center
Identifying Cell-Cell Signaling Driving Pulmonary LAM Pathogenesis Using Spatial Omics Strategies

Career Development Award

Kanth Swaroop Vanka, PhD
University of Pennsylvania
The Unexplored Role of Lung Macrophages in LAM Disease Pathogenesis

The Foundation prioritized investment and support for two innovative patient-focused studies: LAM PREP and LAMFit.

The LAM Foundation conducted outreach to recruit for important LAM research studies including the NIH LAM Protocol, MIDAS, MILED and the Menstrual Variation in LAM study (MVL).

The LAM Foundation Early Career Network (TEN) met on four occasions providing a unique environment for young investigators to discuss their LAM research and career goals.

A research poster reception of 39 exhibits was open to all attendees, including patients and families.

Clinical Trials & Clinical Care Resources

The LAM Clinic & Research Network continues to expand and provide locally based, expert care for women with LAM around the world. This active network met quarterly to share cases and collaborate on patient care initiatives. The LAM Foundation hosted 55 members of the LAM Clinic and Research Network at The LAM Foundation Luncheon at the ATS International Conference in Washington, DC.

Clinics were added in Richmond, VA, Johannesburg, South Africa, Charlottesville, VA, and Mainz, Germany.

Patient Programs

More than 219 individuals with LAM registered with The LAM Foundation: 155 from the United States and more than 64 from other countries.

Greater than 600 members of our global community attended our virtual events, and the recorded presentations received over 1000 viewings, further spreading LAM education and awareness around the world.

In collaboration with LAM clinic directors, liaisons, and scientists, The LAM Foundation offered 20 virtual events, including LAMposium in Your Living Room webinars, regional educational meetings, and social gatherings.

Ten Circle of Hope Transplant Support Program participants received a lung transplant this year, resulting in the donation of more than 54 tissue samples, and four blood samples to further LAM research.

Financial Statements

The LAM Foundation publishes its IRS Form 990 and Audited Financial Statements on the website’s Financial Statements and Policies page.

We wish to thank these corporations who provided support and sponsorship for our virtual programs in 2023:

  • NDRI
  • GE Community Foundation
  • Rothberg Institute
  • CHEST Foundation