The LAM Foundation

04/22/2026

We are pleased to welcome Nia Edge to The LAM Foundation team as the development and administrative coordinator.

Nia brings a strong background in the nonprofit sector, with experience ranging from international education to supporting community members who faced hardship during COVID-19. Nia holds a Master of Public Administration and a Bachelor’s degree in Liberal Studies, equipping her with a well-rounded perspective on public service and community impact. Passionate about helping others and making a meaningful difference, she is committed to advancing the foundation’s mission through thoughtful and dedicated work.

Join us in giving Nia a warm welcome in the comments.

04/22/2026

1 week away!

Registration is now open for our next webinar!

After a lung transplant, careful monitoring is essential to protect the health and longevity of the transplanted lungs. Rejection can occur even when a patient feels well, so recognizing early warning signs and understanding how rejection is monitored are critical parts of post-transplant care. This session will discuss the different types of lung transplant rejection, common early symptoms, and the tests doctors use to detect changes as early as possible.

Bring your curiosity and submit your questions on this topic to Kkinsey@thelamfoundation.org by April 20, 2026.

Register: https://www.thelamfoundation.org/event/circle-of-hope-recognizing-and-monitoring-earl-signs-of-lung-transplant-rejection/

04/20/2026

Meet Patti Bébien-Aronoff, Co-LAM Liaison for Florida, Region 7.

Patti was diagnosed in May of 2012 and has been very active in the LAM community. She served on the Board of Directors for 5 years as the Secretary and was the LAM Liaison in Philadelphia/New Jersey (Region 4) for 10 years. Traveling back and forth between Florida and Las Vegas, Patti is eager to serve wherever she lands.

"As soon as I was diagnosed with LAM, I immediately contacted The LAM Foundation and got involved. It was the best thing I ever did for me and my family. I encourage every Lammie to do the same, so you do not feel so alone with your diagnosis. There is nothing better than being able to connect with other Lammies who truly understand what you are going through"

The LAM Foundation is deeply grateful for the commitment of our LAM Liaisons like Patti who provide communities of care for women with LAM. LAM Liaisons are a listening ear, a source of empathy, and facilitators of resources and support for women navigating the unique challenges of this disease.

Click the link below to learn more about the LAM Liaison Network and to find a liaison in your area.

https://bit.ly/46qbsuA

04/17/2026

PAR Patients & Experts Forum | Drug Repurposing & Complementary Therapy

Could an existing medication hold new promise? Could complementary approaches improve quality of life alongside standard care? This forum brings together the PAR community to explore these questions openly — with expert insight and real patient voices at the table.

Whether you're a patient, caregiver, researcher, or clinician, your perspective matters. Come ready to learn, ask questions, and be part of the conversation.

Register to join online: https://ow.ly/uHgk50YLjfn

Questions? Please email the PAR Chair and staff at par@thoracic.org for more information

04/16/2026

It's an exciting time for The LAM Foundation! After 30 years of calling Cincinnati, Ohio our homebase, we've made a strategic decision to move forward as a remote team as of May 15th.

Initiated and led by TLF's Board of Directors, the vision for an organization with nationwide representation was set in motion with the search for an Executive Director. With that hire, we are now an established team working across the country.

This is a step forward to help us achieve our goal to catalyze new treatments and ultimately a cure for LAM. By embracing a geographically distributed remote model, we can operate with efficiency and flexibility and direct our resources toward research, patient support, and community connection. Our presence and impact are not decreasing; they are being optimized for the future.

We are deeply grateful for our roots in Cincinnati, Ohio, and extend special thanks to our founders, Sue Byrnes and Dr. Frank McCormack, for helping create a supportive and welcoming home for The LAM Foundation.

As we make this transition, you can expect continuity:

📞Same phone numbers and office hours

💖The same dedicated, accessible staff

🎁Unchanged online giving options

To learn more and add our new address to your contacts, visit our FAQ page: https://www.thelamfoundation.org/faq-tlf-move-to-remote/

04/15/2026

Registration is now open for our next webinar!

After a lung transplant, careful monitoring is essential to protect the health and longevity of the transplanted lungs. Rejection can occur even when a patient feels well, so recognizing early warning signs and understanding how rejection is monitored are critical parts of post-transplant care. This session will discuss the different types of lung transplant rejection, common early symptoms, and the tests doctors use to detect changes as early as possible.

Bring your curiosity and submit your questions on this topic to Kkinsey@thelamfoundation.org by April 20, 2026.

Register: https://www.thelamfoundation.org/event/circle-of-hope-recognizing-and-monitoring-earl-signs-of-lung-transplant-rejection/

04/13/2026

The Easy Breathers are at it again for their 13th Million Dollar Bike Ride! Join us in person in Philadelphia on Saturday, June 13, or virtually from your chosen location on your chosen date. Thanks to your generous support, The LAM Foundation's Easy Breathers has raised nearly $1 million over the last twelve years.

Join our team and create your fundraising page today!
https://ow.ly/SUuv50YoEYl

04/10/2026

Congratulations to Dr. I. Caroline Le Poole, PhD, from Northwestern University Feinberg School of Medicine, Boston, MA, for receiving the Pilot-Feasibility Award. Her research will focus on Rapamycin-resistant CAR T-cells for LAM.

04/09/2026

Looking to Reduce Taxes + Create Impact?

A Charitable Remainder Trust (CRT) can provide income to you or your loved ones — and leave a meaningful gift to The LAM Foundation.

$ Income stream for life or term

$ Capital gains tax deferral

$ Tax deduction now, LAM support later

Great for appreciated assets or complex estates.

Learn more tax friendly ways to give at thelamfoundation.org/waystogive

04/08/2026

Join The LAM Foundation Community today!

Sign up to become a part of our supportive network of women with LAM, their loved ones, scientists, and clinicians. Receive valuable resources and stay informed on the latest LAM-related news and events.

https://ow.ly/cvKN50XjNTW

04/07/2026

Last month, TLF was represented on the national stage at the American Medical Women’s Association (AMWA) Annual Meeting by board members Dr. Lyndsay Hoy and Dr. Nancy Spector. Speaking at the intersection of women’s reproductive health and rare disease, Dr. Hoy highlighted the urgency of making conditions like LAM more visible and better understood. Dr. Spector discussed women's leadership in a time of crisis. We are grateful for their dedication to being leaders in women's health, advocacy, and the LAM community.