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Recap: RLDC•2018 & LAMposium

From September 6-9, 2018, the Northern Kentucky Convention Center transformed into a hub for rare lung diseases research. More than 400 researchers, clinicians, individuals with rare lung diseases, family members, patient advocacy partners, and sponsors filled the halls. One common goal brought us all together: Finding answers for those who live with these diseases. 

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Tags: Breath of Hope Gala fundraising LAMposium research RLDC 2018

Article on LAM Published in Society of Academic Emergency Medicine (SAEM)

The University of Cincinnati’s Nishant Gupta, MD, recently wrote and published a commentary article about Primary Spontaneous Pneumothorax for the Society of Academic Emergency Medicine (SAEM) Journal. The article explains that a primary spontaneous pneumothorax can often be the symptom of a more serious underlying lung disease, such as lymphangioleiomyomatosis (LAM), Birt-Hogg-Dubé syndrome or pulmonary Langerhans cell histiocytosis.

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2018 Optime Magistrum Award

Scientific Advisory Board member, Kathryn Wikenheiser-Brokamp, MD, PhD, was recently honored with the Optime Magistrum Award.

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The LAM Foundation Advocates for Fair Oxygen Use

In an ongoing attempt to continue to advocate for patient access to oxygen, The LAM Foundation is proud to be one of eleven organizations issuing a letter to the Acting Secretary of the Department of Health and Human Services.

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Million Dollar Bike Ride Grant Award Winners

The LAM Foundation is proud to announce the 2017 UPENN Orphan Disease Center (ODC) Grant Award winners. Two projects, for a total of $100,120 were awarded to LAM scientists this year. The LAM Foundation Easy Breathers Cycling team raised more than $50,000 which was matched by a grant from the ODC. The team participated in the 2017 Million Dollar Bike Ride for the fourth consecutive year and has raised over $400,000 to date.

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2017 Grant Award Winners

The LAM Foundation is proud to announce our 2017 Grant Award winners, which resulted in funding for three exciting research projects totaling $380,000.  These projects were all peer reviewed by The LAM Foundation’s Scientific Advisory Board and approved by our Board of Directors. 

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Dr. Nishant Gupta named Director of The LAM Clinic Network

Dr. Nishant Gupta, MD, of the University of Cincinnati Medical Center has been named the Medical Director of The LAM Clinic Network. In this role, he will serve under Dr. Frank McCormack who has been Scientific Director since The LAM Foundation’s inception in 1995.

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Tags: LAM Clinic Network Nishant Gupta MD

Multicenter International Durability and Safety of Sirolimus in LAM (MIDAS) Trial

The MIDAS Study has been open and enrolling LAM patients for about two years. There are now over 200 participants eager to contribute to LAM research. Many women with LAM have already consented for the study through the University of Cincinnati and will be followed by their local LAM clinic.

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Tags: LAM Research MIDAS Trial

The Multicenter Interventional Lymphangioleiomyomatosis Early Disease (MILED) Trial Is Open to Enrollment

The MILED Trial is a research study led by Dr. McCormack at the University of Cincinnati. The study is very close to opening additional sites with a goal of opening all sites by the end of 2017. The study will enroll 60 eligible LAM patients across the country.

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Tags: LAM Research MILED Trial

LAM and TSC Patients Present to the FDA

While in Washington, DC in June, The LAM Foundation and TS Alliance joined forces to communicate the patient perspective on living with LAM to the Food and Drug Administration (FDA). This important work helps the FDA understand the ‘Voice of the Patient’ and gives them perspective on living with these diseases so they can make better decisions on future drug development.

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Tags: FDA

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