The LAM Foundation’s 2024 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.

As we reflect on another remarkable year, The LAM Foundation’s commitment to transforming the lives of individuals with LAM remains stronger than ever. Guided by our mission to discover better treatments and ultimately a cure, we have continued to champion innovative research, patient support, and advocacy efforts that inspire hope and drive meaningful change.   

 We are profoundly grateful for your trust and partnership.  Your generosity fuels our mission and reinforces the unwavering belief that together, we are making progress possible. 

Advancing LAM Research

  • The LAM Foundation distributed $278,042 to fund research projects in 2024, resulting in a year-end research portfolio of eight active grants. 
  • The LAM Foundation prioritized investment support for two innovative patient-focused studies: LAM PREP and LAMFit. 
  • The LAM Patient Research Priorities (LAM PREP) survey collected more than 750 responses from patients, their loved ones, scientists, and clinicians. 
  • The Foundation conducted outreach to recruit for important LAM research studies, including the NIH LAM Protocol and the Menstrual Variation in LAM Study (MVL). 
  • Our Early Career Researcher Network (TEN) met on three occasions, providing a unique environment for young investigators to discuss their LAM research and career goals. 
  • The LAM Easy Breathers Cycling Team raised $73,958 to support a LAM pilot research grant via the UPenn Orphan Disease Center’s Million Dollar Bike Ride. 

Clinical Trials & Clinical Care Resources

The LAM Clinic & Research Network continues to expand and provide locally based, expert care for women with LAM internationally.  This active network meets quarterly to share cases and collaborate on patient care initiatives. The LAM Foundation hosted more than 50 members of the LAM Clinic and Research Network at The LAM Foundation Luncheon at the ATS International Conference in San Diego, CA. 

One LAM clinic was added in Oslo, Norway. 

Patient Programs

More than 255 individuals with LAM registered with The LAM Foundation: 60% from the United States. 

More than 1,000 members of our global community attended our virtual events, and the recorded presentations received over 5,700 viewings, further spreading LAM education and awareness around the world.   

In collaboration with LAM clinic directors, liaisons, and scientists, The LAM Foundation offered 34 virtual events, including LAMposium in Your Living Room webinars, regional educational meetings, and social gatherings.  

Nine Circle of Hope Transplant Support Program participants received a lung transplant this year, resulting in the donation of more than 38 tissue samples, and one blood sample to further LAM research.  

Organizational & global community

  • 560 new donors joined the LAM community in support of our mission. 
  • The Day of Giving fundraising campaign raised more than $509,000 for LAM research. 
  • More than 1,000 new individuals registered with the Foundation. 
  • In partnership with the 11 international organizations of the Worldwide LAM Patient Coalition, we helped increase global awareness of LAM via shared content, speakers, clinicians, and Worldwide LAM Awareness Month. 

Financial Statements

The LAM Foundation publishes its IRS Form 990 and Audited Financial Statements on the About Us page of the website. 

We wish to thank these corporations who provided support and sponsorship for our virtual programs in 2024:

  • NDRI
  • General Electric Evendale’s Community Service Fund
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