Lymphangioleiomyomatosis (LAM) is a severe multisystemic and predominantly female disease that primarily affects the lung. Because of its cellular characteristics, it is classified by the

More than 800 members of the rare disease community, including 12 passionate individuals living with LAM and their families, teamed up for Rare Disease Week

The FAA has implemented a rule change regarding lithium batteries in portable oxygen concentrators (POCs), limiting the watt-hour rating of batteries to 160 Wh, with

Mutations in the TSC (tuberous sclerosis complex) genes cause the overactivation of a growth pathway called mTORC1 in lung cells, leading to a disease called

The loss of the TSC2 gene, either inherited or sporadic, can lead to pulmonary lymphangioleiomyomatosis (LAM), a rare lung disease characterized by cystic growths caused

We are pleased to inform you that the LAM Patient Research Priorities Survey (LAM-PREP), led by Dr. Marina Holz, has been a success. While Dr.

From August 5-16, LAM patients: Beth Daugherity, Ali DeChristopher, Steph Dreyer, Sarah Poitras, Mary Stojic, Abigail Passeri, Ally Venugopal, Elizabeth Zampino, and Cindy Beasley were

Lymphangioleiomyomatosis (LAM) is a rare but serious lung disease mostly affecting women of reproductive age. LAM leads to lung damage through the formation of cysts.

The LAM Foundation recently issued recommendations for the FDA’s Rare Disease Innovation Hub, urging it to prioritize the unique needs of women affected by rare

Patients with interstitial lung diseases (ILDs), including lymphangioleiomyomatosis (LAM), have unique risks for adverse health events during exercise training outside of a medically supervised setting.

This study addresses the cystic lung destruction in Lymphangioleiomyomatosis (LAM). Because LAM may progress over many years, doctors may use pulmonary function tests, exercise tests,

Bev Jackson is one of the leading LAM community advocates for passing SOAR (Supplemental Oxygen Access Reform) legislation. Her interview has been edited for length

Greetings! How lucky am I that I get to work with the LAM community again?!  Throughout my long professional career, I have never encountered a more

Dr. Wikenheiser-Brokamp of Cincinnati Children’s Hospital Medical Center was awarded an Established Investigator Award in 2022 for her project titled:  Identifying Cell-Cell Signaling Driving Pulmonary

One of the greatest challenges in caring for patients with lymphangioleiomyomatosis (LAM) is to find better ways to track disease progression, either off or on

PHONE CALLS TO CONGRESS NEEDED The LAM community has an opportunity to advocate for improved oxygen therapy through a simple phone call to their congressional

Lymphangioleiomyomatosis (LAM) is a complex lung disease characterized by cyst formation due to mutations in the TSC1/2 genes, leading to the overactivation of a molecular

Tuberous Sclerosis Complex (TSC) is a genetic disorder caused by mutations in the TSC1 or TSC2 gene, leading to the hyperactivation of the mechanistic target

The Board of Directors is pleased and excited to announce the appointment of Dr. Lyndsay Hoy as the inaugural Chief Mission Officer (CMO) of The

Dear LAM Community Members, The LAM Foundation prioritizes supporting LAM scientific research, funding a wide range of projects and initiatives. To maximize impact for LAM

“Rare diseases are often disregarded given their rarity. Most are underdiagnosed. The minute you tell clinicians that this is actually four to five times more

Dr. Vera Krymskaya has been appointed Scientific Director at The LAM Foundation after serving as interim since July 2023. She is the first female PhD

Dear LAM Community Members, The LAM Foundation prioritizes supporting LAM scientific research, funding a wide range of projects and initiatives. To maximize impact for LAM

The mTORC1 pathway is a signaling pathway in cells in the body that controls cell growth and survival. In many cancers and in LAM, this

LAM is caused by changes in some genes that control cell growth called the mTORC1 pathway. Cells use this pathway to make many copies of

Google told me I had ten years to live. Ten years. Isaiah turned 10 this year, and he’s only just begun to live a life.

On behalf of the Board of Directors of The LAM Foundation, I am thrilled to announce the arrival of Dr. Patricia A. Gentile, Ed.D, as

The LAM Foundation was made aware just yesterday by Pfizer that they will no longer sell or have availability of their brand drug, RAPAMUNE® in

After a decade of remarkable leadership of the LAM Foundation, Sue Sherman has informed the Board of Directors of her decision to step down from

A question that comes up frequently within the LAM community is whether exercise can improve life for individuals with LAM – and if so, how

COVID-19 continues to persist in the community at a relatively low level, mainly in the form of Omicron subvariants. Omicron subvariants are highly transmissible but

Although the FDA’s approval of sirolimus for lymphangioleiomyomatosis was a major breakthrough in treating the disease, the drug does not work for all LAM patients.

The TSC Alliance® and The LAM Foundation will join together once again to co-host four Regional TSC & LAM Conferences in 2023 aimed at individuals

June 30 is World Pneumothorax Day and a great opportunity to educate yourself and your loved ones about what is often a painful and debilitating

Cycling is a mix of disciplines: mountain, road, BMX, cross country, downhill, touring, fat tire, tandem, leisure/urban, cycle cross, and the latest new thing, gravel.

Dr. Bonnie Wang is a clinical assistant professor in internal medicine and pulmonary and critical care at the University of Michigan. Her clinical and research areas of

Most public health challenges may seem obvious. The COVID-19 pandemic, for example, swept the globe and in some way touched the lives of everyone. But

Our long-awaited attendance at our first LAMposium was truly an experience to remember.  Being a loved one of a woman with LAM and a physical

Thank you for your interest in our recent LAMposium in Your Living Room (LYLR) educational webinar, “Henske & Hammes Research Report: Highlights from the 2022

In November 2020, my 24-year-old daughter Kristin was diagnosed with LAM.  As a mother, I’m used to fixing problems for my children. But this was

In 2020, Meagan Knight was a young newlywed, working as a nurse in a hospital COVID-19 unit when her lungs collapsed. No, it wasn’t COVID-19.

For seven years, I continually searched for answers because I knew something was wrong with my health. I had a hard time breathing and started

Trust & Estate Administrator | Retired, Falls Church, VA Age: 64 | Diagnosed at age: 45 “Living with LAM has been an interesting journey! Although not

Marketing Professional | Founder, Accessible Itineraries | Certified Professional Coach, Brooklyn, New York Age: 42 | Diagnosed at age: 30 “I was diagnosed with LAM six

Stay at Home Mom, Newcastle, NSW Australia Age: 39 | Diagnosed at age: 26 “Being diagnosed at the age of 26 was very mentally challenging for

When spring arrives, most high school seniors are gearing up for graduation, prom, and going away to college. Not so for 17-year-old Adrianaliz, who was

Beth Daugherity had been suffering lung and breathing issues for years. After a lung collapse and months of pain, she consulted several doctors to figure

Two years ago, Stephanie Weber’s life was turned upside down. This active mom of three was struggling to breathe. She could barely even care for her Golden Retrievers. Stephanie ended up in the ER with a

Meet Carol Webber. Carol is always on the move as a mom of three. She was diagnosed with LAM in 2018 and was concerned she

A resource offered by The LAM Foundation, the Circle of Hope Transplant Support Program was established in 2018. The program connects LAM patients who are considering lung

Cosmetologist | Mexico “Since my LAM diagnosis, my life has changed completely. From leading to my divorce – because I was misunderstood by my partner

Lung Transplant Recipient | Canada “Living with LAM has been eye-opening. One day you think you’re fine, and the next day you have a rare

Sworn Translator and Interpreter | Guatemala City, Guatemala “I was diagnosed with LAM when I started to feel short of breath. Nothing else had happened

Talent Acquisition & Workforce Generalist | Seaside, California “I remember having chest pains about a year before my actual diagnosis and experienced shortness of breath

I was diagnosed with LAM and probable Tuberous Sclerosis Complex (TSC) in 2019 at 26 years old, when I was working three jobs and attending

As all LAM patients are well aware of, serial lung function testing performed in a physician’s office is the current standard of care to assess

Are you or someone you know over the age of 70 ½ and looking for more ways to give to The LAM Foundation? You may

by Vera Krymskaya, PhD, MBA, Professor of Medicine, Perelman School of Medicine, University of Pennsylvania The LAM community including LAM researchers, clinicians and patients has

By Sandra Starnes, MD, Associate Professor of Surgery, John B. Flege Chair in Cardiothoracic Surgery, University Of Cincinnati College Of Medicine Pneumothorax (collapsed lung from