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Articles for category Educational Resources

A Phase II Clinical Trial of an Aromatase Inhibitor for Postmenopausal Women with LAM

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Lymphangioleiomyomatosis (LAM) predominantly affects women and can worsen with pregnancy, estrogen treatment, and the menstrual cycle, which suggested an important role for estrogen in the development and progression of this disease.

In preclinical laboratory studies, estrogen appeared to promote the growth and spread of LAM-like cells, while suppression of estrogen reduced the survival of LAM cells. In other human clinical trials, there has been a suggestion that lung function declines more slowly in LAM patients after menopause, although this was not clear when this clinical trial was being developed.

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Tags: Research
Categories: Educational Resources

Management of Pneumothorax – What is the Best Strategy?

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Pneumothorax (collapsed lung from accumulation of air between the lung and the chest wall) is a significant problem in patients with LAM. Up to 70% of patients will ultimately develop at least one pneumothorax in their lifetime and this is often the first sign of LAM. Most commonly, the pneumothorax occurs spontaneously without inciting factors (such as vigorous exertion). Unlike patients with Primary Spontaneous Pneumothorax (which occurs in patients without apparent underlying lung disease) who have about a 25% risk of recurrent pneumothorax after a first episode, three-quarters of women with LAM suffer from recurrence if nothing is done to prevent it. In a survey conducted from The LAM Foundation database, participants reported an average of 3.5 episodes of pneumothorax resulting in an average of one month total spent in the hospital.

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Tags: pneumothorax
Categories: Educational Resources

Pulmonary Lymphangioleiomyomatosis (LAM): A Monogenic Neoplasm That Provides a Window into Cancer

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The LAM community including LAM researchers, clinicians and patients has made incredible progress over the last 20 years. Frank McCormack and I were honored to write an invited review article “Lymphangioleiomyomatosis: A Monogenic Model of Malignancy” for the prestigious The Annual Review of Medicine, which covers significant developments in various fields of medicine since 1950.

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Tags: Research
Categories: Educational Resources

The Gift of New Lungs and New LAM Cell Discoveries

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In early July, LAM Patient, Linda Grunberg received a much-anticipated call from the lung transplant program at the Hospital of the University of Pennsylvania (HUP), that it was her turn to receive new lungs. After living with LAM for nearly 20 years, she was certainly ready, “As a LAM patient, I've been coming to HUP for 19 years and had the utmost confidence that this would be the best place to have my transplant.”

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Tags: Lung Transplant Tissue Donation
Categories: Educational Resources

Rare Disease Advocates at Work!

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Global Genes Summit

Development Manager, Katie Jensen recently traveled to the Global Genes Rare Patient Advocacy Summit to learn from and collaborate with other rare disease leaders. Read about what she learned, who she met, and why she’s even more inspired for the Patient Benefit Conference & LAMposium LA!

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Tags: Advocacy Global Genes LAMposium LA Patient Benefit Patient Benefit Conference Rare Diesases TS Alliance
Categories: Educational Resources

Anyone Can Be a Fundraiser

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From the start, Kristy and I committed ourselves to giving all we could to support The LAM Foundation’s research. But after a couple of years I realized there is only so much that one family can do alone. So, I decided I was going to have a “fund-raiser”.

I had heard many of the success stories about patients, their families and friends having fund-raisers. But, even though I have always enjoyed giving to other people, the idea of asking for money for myself (or even for my family) makes me uncomfortable. I know that a lot of people probably feel this way, but this just was too important to let those feelings deter me.

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Tags: Fundraising
Categories: Educational Resources

Advocacy Update: NIH Research Funding

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Since our time on Capitol Hill in late June, there has been much happening around the 2018 congressional budget. Below is the latest regarding NIH funding and information about how you can continue to help ensure this important funding is sustained in the 2018 budget.

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Tags: Advocacy NIH Funding
Categories: Educational Resources

The New Zealand LAM Charitable Trust

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The New Zealand LAM Charitable Trust was founded in 1999 by Bronwyn Gray and communicates with nearly 20 women with LAM. The home office is located in Auckland, New Zealand with one full-time employee, a voluntary coordinator and fundraiser and an eight member voluntary trustee group. The LAM Charitable Trust works closely with Scientific Advisor, Professor Merv Merrilees and Medical Advisors, Professor John Kolbe from the University of Auckland along with Dr. Christine Forster.

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Tags: LAM Awareness WWLAM
Categories: Educational Resources

LAM Netherlands

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LAM-Netherlands was founded in 2010 by Ine van Meijeren and communicates with 60 women with LAM. The headquarters for LAM-Netherlands is in Wijk and Aalburg. The organization is run by four volunteers, when needed, they ask for help from local women with LAM and their families.

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Tags: LAM Awareness WWLAM
Categories: Educational Resources

FLAM Association - France Lymphangioléiomyomatose

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FLAM Association (France Lymphangioléiomyomatose) was founded in July 2001 by Michèle Gonzalves and communicates with approximately 160 patients. The head office is based in Gosselming (Moselle, department 57). The Council has 10 members, all volunteers.

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Tags: LAM Awareness WWLAM
Categories: Educational Resources

About Alambra

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Alambra, the Brazilian association for Lymphangioleiomyomatosis patients, was founded in 2004 by Simone Garcia Ribeiro and Flávia Patitucci Sobroza. There are currently 120 LAM patients registered in the database of the Clinics Hospital of the Faculty of Medicine of the University of São Paulo.

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Tags: LAM Awareness WWLAM
Categories: Educational Resources

LAM Academy

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LAM Academy is a joint project between the Department of Respiratory Medicine and Allergy at the Karolinska University Hospital in Stockholm, Sweden, LAM patients and their relatives.

LAM Academy was founded in 2008 by LAM patient Anette von Koch and Medical Advisor Maryam Fathi, MD, PhD, from Karolinska University Hospital. LAM Academy communicates with more than 55 LAM patients. As there are less than 10 million inhabitants in Sweden, around 10 women per million are diagnosed with LAM.

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Tags: LAM Awareness WWLAM
Categories: Educational Resources

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