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The Future of Monitoring Lung Function in LAM

Posted on May 07, 2021   |   

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 the disease status for LAM patients. A full set of lung function tests comprises of the following:

1) Spirometry: measures the maximum amount of air you can exhale in the first one-second, known as forced expiratory volume in one-second (FEV1), and the total amount of air you can exhale, known

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Topics: Home Spirometry        Categories: Educational Resources

Recent Articles

Articles for category Educational Resources

The Gift of New Lungs and New LAM Cell Discoveries

Posted on November 21, 2017   |   

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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Topics: Lung Transplant Tissue Donation        Categories: Educational Resources
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Rare Disease Advocates at Work!

Posted on September 29, 2017   |   

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

Anyone Can Be a Fundraiser

Posted on September 08, 2017   |   

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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Topics: Fundraising        Categories: Educational Resources

Advocacy Update: NIH Research Funding

Posted on July 31, 2017   |   

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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Topics: Advocacy NIH Funding        Categories: Educational Resources

The New Zealand LAM Charitable Trust

Posted on June 16, 2017   |   

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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Topics: LAM Awareness WWLAM        Categories: Educational Resources
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