The LAM Foundation's 2021 Annual Report

Throughout the second year of the pandemic, The LAM Foundation continued to serve our community, providing high-quality programming and resources to our patients, clinicians, researchers, and families.

We could not have done it without you. Our donors and partners contributed over $2.2 million in 2021 – a record amount for the Foundation.

No one has lost focus. Your support allowed us to safeguard patient health while our scientists continued their relentless effort to find more effective treatments, and ultimately a cure, for LAM. In 2021, we increased our research funding to $610,000.

We are extremely grateful for every person and organization who partnered, donated, and volunteered in 2021. Our patients have shown extraordinary selflessness and resilience by continuing to participate in clinical trials, mentor, and fundraise on behalf of The LAM Foundation.

Advancing LAM Research

  • The LAM Foundation awarded $610,000 to fund six new research projects in 2021 including three first-time award recipients.Grant Awardee Information

    1. Seed Grant
      Amy Ryan, Ph D
      University of Iowa
      Interaction of Lymphatic Endothelial and LAM Cells Driving Lymphangioleiomyomatosis Pathogenesis
    2. Pilot Award
      Rhonda Szczesniak, PhD
      Cincinnati Children’s Hospital Medical Center
      Monitoring Risk of Rapid Lung Function Decline: The LAM Prediction (LAMP) Early Translation Study
    3. Special Research Award
      Yan Xu, PhD
      Cincinnati Children’s Hospital Medical Center
      LAM Cell Atlas (LCA): An Intuitive Web Portal for Integrative Analysis and Visualization of LAM Single Cell Multiomics Data
    4. Established Investigator
      Issam Ben-Sahra, PhD
      Northwestern University
      The TSC-mTORC1 Network Controls Bicarbonate Uptake to Support Cell Growth
    5. Established Investigator
      Yan Tang, PhD
      Brigham and Women’s Hospital
      Nanomedicine for Eliminating Rapamycin Tolerant Persister Cells
    6. Career Development
      Minzhe, Guo
      Cincinnati Children's Hospital Medical Center
      An Information Retrieval System for Multiomics Data Integration and LAM Biomarker Discovery
  • A $74,000 LAM pilot grant was awarded via the UPenn Orphan Disease Center’s Million Dollar Bike Ride and the LAM Easy Breathers Cycling Team.

  • More than 155 attendees participated in the 2021 Virtual International TSC & LAM Research Conference: Driving Discoveries Beyond Boundaries, co-hosted with the TSC Alliance.

  • More than 85 attendees participated in the 2021 LAM Research Virtual Conference, Transforming Our Understanding of LAM: The Path Forward.

  • The Foundation conducted an outreach program to support clinical trial recruitment for the MILED trial, which is now 91% enrolled, and contributed $40,000 to sustain the MIDAS registry.

Clinical Trials & Clinical Care Resources

  • The LAM Clinic Network provided leadership and guidance during the COVID-19 pandemic to ensure LAM patients had the most up to date resources, including community Q&A webpage, vaccine recommendations, and mask guidelines. The Foundation co-hosted 2 virtual town halls in partnership with the TSC Alliance, which received over 675 viewings.
  • 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 of tools for patient support via the LAM Clinic Network.
  • The LAM Foundation was awarded a $15,000 Community Service Grant from CHEST for the dissemination of the LAM Clinical Practice Guidelines around the world.

Patient Programs

  • Over 200 individuals registered with the Foundation: 100+ from the United States and nearly 100 from other countries.
  • In collaboration with our LAM clinic directors, liaisons, and scientists we offered 25 virtual events, including LAMposium in Your Living Room webinars, educational meetings, and social gatherings.
  • More than 1,100 members of our global community attended our virtual events, and the recorded presentations received over 650 viewings, further spreading LAM education and awareness around the globe.
  • Three Circle of Hope Transplant Support Program participants received a lung transplant this year, resulting in the donation of more than 10 tissue samples to further LAM research.

We wish to thank these corporations who provided support and sponsorship for our virtual programs in 2021:

NDRI Novartis Pfizer General Electric