The LAM Foundation's 2020 Annual Report

We began 2020 with energy, momentum, and high expectations for the 25th Anniversary of The LAM Foundation. Our vision for a year of celebration and reflection vanished unexpectedly in early March with the cancelation of our signature event, The 2020 International LAM Research Conference and LAMposium. That was just the beginning of a year filled with fear, unpredictability, adaption, and resilience.

Now we know what we could not appreciate then, 2020 will be remembered as one of the most eventful years in recent history.  Through the global pandemic and everything that came with it, The LAM Foundation rose to the challenge of serving our community and delivering high-value programming and resources to our patients, clinicians, researchers, and families.

We are extremely grateful for every person and organization who partnered, donated, and volunteered in 2020. Your support allowed us to effectively respond to the COVID-19 crisis while at the same time safeguarding our valuable work and progress toward the mission to find safe and effective treatments, and ultimately a cure for LAM.

Advancing LAM Research

With the support of our generous donors, The LAM Foundation exceeded pre-pandemic research support expectations by fully funding three grant proposals from scientists studying LAM. We want to thank The LAM Foundation’s Scientific Advisory Board (SAB) members for reviewing the grant proposals and recommending finalists.

Grant Awardee Information

Pilot Award
$50,000
Simon Johnson, DM
University of Nottingham
Using Artificial Intelligence to Predict Need for Therapy in LAM

Career Development Award
$180,000
Katherine Maisel, PhD
University of Maryland
Targeting Immune Suppression in Lymphangioleiomyomatosis Using Adjuvant Immunotherapy

Career Development Award
$180,000
Tina Liu, PhD
The Brigham and Women's Hospital
Targeting the Immune Checkpoint Molecule B7-H3 in the Therapy of LAM


University of Pennsylvania Orphan Disease Center – Million Dollar Bike Ride Grant

For the 7th year in a row, The LAM Foundation and the LAM Easy Breathers cycling team participated in the Million Dollar Bike Ride, raising more than $35,000. Due to the global pandemic, the bike ride was virtual in 2020, and the team cycled from the safety of their homes and local communities. The total raised was matched dollar for dollar by the Penn Orphan Disease Center.

The following LAM researcher was awarded a $73,000 pilot award:
Elizabeth Henske, MD
Brigham and Women's Hospital, Boston, Massachusetts
"Role of CTHRC1 in the Pathogenesis and Therapy of LAM"

Early Stage Investigator Symposia

The LAM Foundation continued its tradition of encouraging early-career scientists to pursue the study of lymphangioleiomyomatosis and tuberous sclerosis complex. In September and October of 2020, The Foundation hosted two virtual Early Stage Investigator Symposia, co-chaired and moderated by three LAM scientists, Hilaire Lam, PhD, Issam Ben-Sahra, PhD, and Chase Hall, MD. More than 175 attendees participated in the symposia, which featured ten presentations by early career investigators, followed by Q&A.

Clinical Trials & Clinical Care Resources

In 2020, the Multicenter Interventional Lymphangioleiomyomatosis Early Disease (MILED) Trial continued to pursue answers to an important clinical question: if we START low dose sirolimus EARLY, can we maintain normal lung function? Travel to participate in the MILED trial was halted temporarily and the study sites devised new ways to keep the study open while also keeping enrollees safe. This study is led by Frank McCormack, MD, at the University of Cincinnati and is being conducted at select LAM Clinics located across the country. The LAM Foundation has played a pivotal role by connecting with patients and increasing enrollment for this study, and funding patient travel.

"We are very thankful for the many women who have inquired about the study, even if they were not eligible, and for those who shared study materials or personal experiences with other women with LAM or on social media," says Susan McMahan, project manager for the MILED Trial.

More information on Current Trials is located in the LAM Patients, Family & Friends Section of our website.

The LAM Foundation is always seeking ways to improve the care and treatment for women with LAM. LAM Clinics are strategically located in hospitals or medical centers where there are clinicians and researchers who have an interest in LAM and who value research in rare lung diseases.

Our US LAM Clinics and International Clinics are located in the LAM Patients, Family & Friends Section of our website.

Patient Programs

With the cancelation of the much-anticipated 2020 LAMposium, The Foundation quickly found new ways to bring the LAM community together for quality education and essential emotional support. We created and hosted six LAMposiums in Your Living Room (LYLR) events in 2020. These interactive educational webinars featured a broad range of topics presented by LAM experts. We partnered with our LAM Liaison Patient and Family Network, Clinic Director Network, and LAM scientists to provide these sessions. Importantly, each LYLR included a patient spotlight and discussion forum to sustain community connection and provide new patient support.

Additionally, The LAM Foundation partnered with the TSC Alliance to host three virtual conferences in the fall of 2020. Altogether, the Foundation was instrumental in producing 16 virtual events that engaged more than 1,000 live attendees and 850 post-event views, spreading education, support, and awareness around the world.

Despite the global pandemic, new cases of LAM were diagnosed throughout 2020, and 170 new patients registered with The LAM Foundation, 125 from the United States and 45 from international countries. Since its inception in 1995, 3,250 women with LAM have registered with the Foundation. 2844 are currently living.

Circle of Hope Transplant Support Program

The Circle of Hope (COH) was launched in 2018 and is led by Sharlene Dunn, Director of Patient Services and Dan Dilling, MD, LAM Clinic Director at Loyola Medicine in Chicago. The program offers one-on-one mentorship, group support, and education to women with LAM who are considering and/or undergoing the lung transplantation process. Additionally, it offers online educational webinars and support groups.

The program makes every effort to educate and encourage patients regarding tissue donation for LAM research (lung and other organs). This effort encompasses outreach to patients, clinic directors, transplant centers, and LAM scientists, with the goal of achieving a 100% percent rate of tissue recovery and distribution to LAM research labs.

2020 LAM Lung Transplants: 5
Lung tissue donors to LAM research: 5
Total Transplant-related tissue samples recovered: 19
Active LAM research protocols: 5

25th Anniversary of The LAM Foundation

2020 marked the 25th anniversary of The LAM Foundation. Our thoughtful plans to celebrate the vision of our founders and many years of accomplishments by our scientific, clinical, and patient communities were abruptly changed due to the global pandemic. While we were not able to celebrate in person, we did gather for a Virtual 25th Anniversary Celebration & Breath of Hope Gala that was attended by hundreds of supporters. We surpassed our goal of $250,000, with gifts exceeding $330,000 to fund LAM research.

COVID-19 Resources & Support

The global COVID-19 pandemic posed significant challenges for individuals living with LAM. Therefore, in 2020, The LAM Foundation took a leadership role in educating and safeguarding our community. Our actions included:

  • Proactively canceling LAMposium 2020
  • Devising a three-tiered risk stratification system to guide patients in their day-to-day decision making in the initial phase as well as re-opening
  • Hosting and promoting numerous COVID-19 related town halls and webinars, including two joint town halls with the TSC Alliance
  • Timely updates of The LAM Foundation COVID-19 page with up-to-date information regarding vaccinations and other FAQs

 

We wish to thank these corporations who provided support and sponsorship for our virtual programs in 2020: