In The News
Recent Patient Articles
Click here to read Rebecca Nissly's essay on LAM that won $100,000 from Metamucil.
Click here to read an article about Mary Stojic.
Click here to read an article about Landi Bregman.
Click here to read an article about Gwen Pryor.
Click here to read an article by Nicole Seefeldt.
Click here to read an article about Sarah Potrias.
Click here to read an article about Stacy Wheelus.
Click here to read an article about Peggy Haupt.
Click here to view Peggy Haupt's website LAPS for LAM and the section called "Meet the Faces of LAM."
Helping Young Women Overcome LAM, a Rare Lung Disease
November 12, 2013
LAM scientist Elizabeth Henske, MD, Director of the Center for LAM Research and Clinical Care at Brigham and Women’s Hospital, is hoping to change the lives of women living with LAM. She leads a research team that is working to improve diagnosis and test new treatments for this disease. Click here to read the full article.
NORD and The LAM Foundation in the Wall Street Journal
October 4, 2013
To keep the LAM community informed, we wanted to let you know that the following op/ed piece from NORD was published in the Wall Street Journal (print and online editions) click here to view the article.
New VEGF-D Article Published in The Lancet Respiratory Medicine
June 24, 2013
Congratulations to the MILES team for the publication of another important study. Using data from the MILES Trial, the group reported that high vascular endothelial growth factor D (VEGF-D) levels predict response to treatment with sirolimus. Serum VEGF-D now has two clinical uses, as a diagnostic tool that obviates the need for lung biopsy in some patients, and to help with decisions regarding treatment. Thank you again to all patients who participated in MILES Trial.
Click here to read the article published in The Lancet Respiratory Medicine.
NIH Grant Supports BCM Research For Lymphangioleiomyomatosis Treatment
June 19, 2013
Click here to read this exciting article about Dr. N. Tony Eissa from Baylor College of Medicine and the grant he is receiving.
URMC Opens Clinic, Initiates Research on Rare Lung Disease in Women
May 14, 2013
Congratulations to our newest LAM Clinic, located in Rochester, NY, on this great article. Click here to view article. Be sure to listen to the very informative video included in the article.
LAM Cells Are Addicted to Glutamine
May 9, 2013
LAM Foundation-funded scientists Alfredo Csibi and John Blenis (Harvard Medical School) recently reported in the journal Cell that mTORC1, the protein that drives cell growth in LAM, directly stimulates the uptake and metabolism of glutamine, the most abundant amino acid in the body. The authors showed that mTORC1 regulates glutamine metabolism by repressing the mitochondrial protein SIRT4, which inhibits one of the steps required to produce energy from glutamine.
Importantly, their study suggests that therapies aimed at targeting nutrient metabolism could be efficacious in diseases with deregulated mTORC1 signaling including LAM.
Congratulations to Drs. Csibi and Blenis!
Click here to read the article in Cell (Cell 153, 1–15, May 9, 2013).
Stunning Breakthrough from TSC and LAM Research
February 21, 2013
LAM Foundation-funded scientists, Drs. Issam Ben-Sahra and Brendan Manning, today reported in the Science journal that mTOR, the cellular growth switch that is stuck ‘on’ in LAM, also directly controls the synthesis of nucleotides, the building blocks for RNA and DNA.
The LAM Foundation congratulates Drs. Ben-Sahra and Manning for this remarkable discovery. This work was funded in part by a LAM Foundation Fellowship Award to Dr. Ben-Sahra. Dr. Manning is a member of The LAM Foundation Scientific Board.
Click here for more information on this important discovery.
Click here to read "Stimulation of de Novo Pyrimidine Synthesis by Growth Signaling Through mTOR and S6K1" in Science Express.
LAM Foundation Cited as a Model for Patient Advocacy in NEJM
November 1, 2012
Click here to read Dr. Lisa Rosenbaum's New England Journal of Medicine article How Much Would You Give to Save a Dying Bird? Patient Advocacy and Biomedical Research. The article is a true testament to what patients go through when making the decision to participate in research. LAM patients certainly exemplify the courageous example of what must happen in order to move LAM science forward.
Mouse Model for Lymphangioleiomyomatosis Suggests Potential Treatment Regimen
October 5, 2012
Click here to read this exciting article from LAM Foundation Funded Scientist Elena Goncharova, PhD, research assistant professor of Medicine, and Vera Krymskaya, PhD, associate professor of Medicine, Pulmonary, Allergy, and Critical Care Division at Penn, and member of The LAM Foundation’s Scientific Advisory Board.
LAM Presentation at NIH
September 21, 2011
Joel Moss, MD, PhD and Frank McCormack, MD recently gave a presentation at NIH. The presentation called Lymphangioleiomyomatosis (LAM) Molecular Insights Lead to Targeted Therapies and Multicenter International LAM Efficacy of Sirolimus (MILES) Trial was recorded. Click here to watch the video.
Frank McCormack, MD, LAM Foundation Scientific Director, gave a speech on Silencing LAM at the University of Utah. Click here to watch the video.
Public Advisory Roundtable (PAR) Excellence Award
May 18, 2011
Frank McCormack, MD, LAM Foundation Scientific Director, was presented the PAR Excellence Award during the American Thoracic Society (ATS) Conference on May 18, 2011 in Denver, CO. PAR is a core component of the ATS that represents persons affected by respiratory disease and provides the patient perspective to the ATS. The PAR Excellence Award honors people who have improved the lives of patients by; enabling research and advancing the understanding of disease through legislation, advocacy or philanthropy; performing basic or clinical scientific works that have produced tangible and significant benefits for affected individuals; and providing vision, hope, support or relief to those who live with life-threatening pulmonary illness.
Past recipients of the PAR Excellence Award include: Claude Lenfant, MD, James P. Kiley, BS, MS, PhD, Talmadge E. King, Jr., MD, Steven Groft, Pharm D, Dean Schraufnagel, MD, Sheldon Siegel,MD, Gordon D. Rubenfeld, MD, Margaret S. Herridge, MSc, MD, MPH, Bernadette Gochuico, MD, and Roy Brower, MD.
May 17, 2011
The MILES Research Team led by Frank McCormack, MD, and The LAM Foundation won the Partners in Progress Award. The research team and Foundation were honored for demonstrating how effective partnership between scientific researchers and the patient community can drive progress in better understanding of rare diseases and possible treatments.
Dr. Frank McCormack Presents MILES Trial Results
April 8, 2011
Click here to listen to Dr. McCormack's presentation. It is a big file so be patient.
New England Journal of Medicine (NEJM) Publishes MILES Trial Results
March 16, 2011
Click here for the NEJM Full Article
The LAM Foundation and Trial Participants Featured in NEJM Editorial
Click here for the NEJM Editorial
Click here for MILES FAQs.
Diagnostic Blood Test Can Identify LAM in Some Patients
Click here to read about this important study conducted by Dr. Lisa Young at the University of Cincinnati and the Cincinnati Children's Hospital Medical Center.
Clinical Availability of Serum VEGF-D Test
The VEGF-D test is now available in a clinical lab at Cincinnati Children's. It can be ordered as a send out test from your clinic or hospital, and it is now done in a CAP/CLIA certified lab such that the results can be used for clinical care. Patients and referring physicians should note that although a serum VEGF-D level of 800 pg/ml or greater in the setting of a typical HRCT scan is diagnostic for VEGF-D, a normal VEGF-D level does not exclude the diagnosis of LAM.
Click here to visit the website for the lab at Cincinnati Children's that does the testing. The VEGF-D requisition form is then in an orange box on the right-hand side.
Or, click here to take you directly to the requisition form.
Frank McCormack, MD, Talks About LAM
Dr. Frank McCormack, Scientific Director of The LAM Foundation, was interviewed at the American College of Chest Physicians Conference (CHEST) regarding LAM. This comprehensive 13-minute interview covers many aspects of LAM. Click here to listen to Dr. McCormack's interview on LAM.