The LAM Foundation’s 2022 Annual Report

With generous support from women with LAM, donors, volunteers, scientists, clinicians, and the broader LAM community, The LAM Foundation continued to pursue new milestones in 2022.

The hallmark of 2022 was the return of our in-person International LAM Research Conference & LAMposium after four years. This seminal event was life-changing for patients and families, energizing for LAM scientists and clinicians, and rejuvenating for donors, staff, and volunteers dedicated to our mission.

The LAM 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.

When we come together, our individual strengths create a greater force with the power to truly RISE and fight for everyone with LAM.

We are sincerely grateful to each and every one of you. We RISE – to research with promise, to innovate with confidence, to support with compassion, and to empower with purpose.

Advancing LAM Research

The LAM Foundation awarded $410,000 to fund five new research projects in 2022.

Grant Awardee Information

Seed Grant

Debbie Clements, PhD
University of Nottingham
Extracellular Matrix Drives Disease Progression and Rapamycin Insensitivity in LAM

Pilot Award

Chung-Wai Chow, MD, PhD, FRCPC
University of Toronto
Respiratory Oscillometry for Lung Function Monitoring in LAM

Pilot Award

Sang-Oh Yoon
University of Illinois
Targeting Proteostasis Systems in LAM

Established Investigator

Carmen Priolo
Brigham & Women’s
Role of Lipid Homeostasis in LAM Progression

Established Investigator

Mary Beth Brown
University of Washington
Introducing ‘LAMFit’ – An mHealth Program to Expand Access to the Health Benefits of Exercise for LAM

A $73,000 LAM pilot grant was awarded via the UPenn Orphan Disease Center’s Million Dollar Bike Ride and the LAM Easy Breathers Cycling Team.

The International LAM Research Conference presented the latest innovations in LAM science, with 102 leading-edge scientists, early career researchers, and clinicians.

Early career LAM researchers showcased their achievements in one-minute poster presentations and an ECR Happy Hour to facilitate professional connections.

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

Clinical Trials & Clinical Care Resources

More than 38 LAM Clinic Directors took part in the first Clinic Director Congress in four years, focusing on challenging cases, clinical practice guidelines, and priorities for LAM clinical care and diagnostic methods.

The LAM Foundation hosted quarterly LAM Clinic Director meetings to facilitate clinical trial updates, rare lung diseases case study presentations and roll-out of new tools for patient support via the LAM Clinic Network.

In partnership with five Worldwide LAM Patient Coalition members and the CHEST Foundation, we have translated the LAM Clinical Guidelines infographic into Portuguese, French, Spanish, Swedish, and Hindi.

Patient Programs

Over 225 individuals registered with the Foundation: 150+ from the United States and more than 70 from other countries.

In collaboration with our LAM clinic directors, liaisons, and scientists we offered 16 virtual events, including LAMposium in Your Living Room webinars, educational meetings, and social gatherings.

More than 820 members of our global community attended our virtual events, and the recorded presentations received over 880 viewings, further spreading LAM education and awareness around the globe.

Six Circle of Hope Transplant Support Program participants received a lung transplant this year, resulting in the donation of more than 45 tissue 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 and our in-person International LAM Research Conference and LAMposium in 2022:

  • NDRI
  • GE Community Foundation
  • Burroughs Welcome Fund
  • Monitored Therapeutics
  • Rothberg Institute
  • UC Foundation
  • Cincinnati Children’s Hospital Medical Center
  • CHEST Foundation
  • University of Cincinnati
  • Bob’s Discount Furniture
  • Morrison Construction