The LAM Foundation’s 2025 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 $385,742 to fund research projects in 2025, resulting in a year-end research portfolio of 14 active grants.
  • Hosted the International LAM Research Conference & LAMposium in Kansas City, MO from September 26 – 28th. 200 women with LAM, and their friends and family, participated in 22 patient and family educational sessions. More than 30 scientific presentations and panel discussions were hosted for the 96 professionals in attendance.
  • The Foundation supported recruitment for important LAM research studies, including the NIH LAM Protocol and LAM tissue donation.
  • Our Early Career Researcher Network (TEN) named new co-chairs: Ildikó Krencz, MD, PhD, and Sara Mikhael Hachem, RPh, PhD.
  • The LAM Easy Breathers Cycling Team raised more than $30,000 to support progress in LAM research through their participation in 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 40 members of the LAM Clinic and Research Network at The LAM Foundation Luncheon at the ATS International Conference in San Francisco, CA.
  • We welcomed a new LAM clinic at Pamukale University in Türkiye.

Patient Programs

  • More than 300 individuals with LAM registered with The LAM Foundation: 56% from the United States. 
  • More than 1,000 members of our global community attended our virtual events, and the recorded presentations received over 2,600 viewings. Since 2020, an additional 21,000 viewings have allowed LAM education and awareness to continue to spread around the world.
  • In collaboration with LAM clinic directors, liaisons, and scientists, The LAM Foundation offered 40 events, including LAMposium in Your Living Room webinars, regional educational meetings, LAM affinity groups, LAM Clinic Director educational webinars, and local social gatherings.
  • 11 Circle of Hope Transplant Support Program participants received a lung transplant this year, resulting in the donation of more than 54 tissue samples, and two blood samples to further LAM research.

Organizational & global community

  • 688 new donors joined the LAM community in support of our mission.
  • The Breath of Hope Gala raised more than $350,000 for LAM research.
  • More than 1,000 new individuals registered with the Foundation.
  • In partnership with the 13 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 2025:

General Electric Evendale’s Community Service Fund

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