From Sue Sherman, Executive Director

We have just wrapped up our most successful conference ever with the RLDC 2016 & LAMposium. Records were shattered, patients and their families were thrilled, new partnerships were forged and physicians and researchers were encouraged and motivated to continue the successes they have already achieved. Most importantly, the vitality and compassion of the LAM Community was on display – empowering all who attended. We were pleased to announce the publication of LAM Guidelines by the American Thoracic Society (ATS) and will actively share that information with clinicians and caregivers. The MILED Trial has been funded by the NIH and work will begin shortly on this important clinical trial. Our online discussion and research forum, LAM360 Community, has been introduced and the LAM family is excited at the possibilities it holds.

If you were in attendance, please enjoy this edition of Currents filled with pictures and memories of the meeting. If you were not able to attend, look for your friends who missed having you with them. We have also included information about our upcoming events in 2017.

Thank you to EVERYONE who supported this meeting with their time, financial support, expertise and endless encouragement.


The 2016 Rare Lung Diseases Research Conference, LAMposium and Breath of Hope Gala took place last week and we are hearing it was one of the most successful gatherings, to date, for The LAM Foundation community. If you were able to join us, we are thrilled we could all spend time together. If you were unable to attend, we hope to see you next year and want to share some highlights from the conference.

Just last week, before anyone walked into the Northern Kentucky Convention Center, LAM researchers and clinicians arrived with some exciting news:

The American Thoracic Society (ATS) and the Japanese Respiratory Society (JRS), in conjunction with an ad hoc guideline development committee of LAM experts, prepared guidelines for the treatment of lymphangioleiomyomatosis. These guidelines were approved by the ATS Board of Directors and endorsed by The LAM Foundation. To view the guidelines, click here.

Additionally, Frank McCormack, MD, Scientific Director for The LAM Foundation announced that the MILED Trial received approval and is now funded by the National Institute of Health (NIH). Research will soon take place to test the efficacy of lower doses of and earlier treatment with sirolimus for LAM patients.

Armed with this news, the entire rare lung disease community and all women with LAM shared an upbeat sense of hope and gratitude to be together.

Thursday evening David Fajgenbaum, MD, MBA, co-founder and Executive Director of Castleman Disease Collaborative Network and is battling idiopathic metacentric Castleman disease welcomed everyone with his opening presentation “Overtime: A Physician-Scientist-Patient Fighting to Cure Castleman Disease”.

Friday morning, RLDC Committee Chairs, Robert Kotloff, MD and William Parks, PhD, welcomed Sally Seymour, MD, FDA Deputy Director for Safety, who presented “Lessons from the Sirolimus Approval Story”, to the Rare Lung Disease Researchers and Clinicians. Then they settled in to learn about 17 rare lung diseases, in rapid intensive 20 minute sessions.

Over at LAMposium, Dr. Frank McCormack presented “LAM Pearls: Ten Things I Want Every LAM Patient to Know." If you missed it, you can watch the LIVE Facebook recording of his presentation by clicking here.

Friday evening at the Rare Lung Diseases Consortium Celebration Banquet, awards and songs of gratitude were given to the many rare lung disease researchers who have dedicated their time and energy to finding cures for LAM and other rare lung diseases.

On Saturday, women with LAM, family and friends learned about advances in LAM research along with how to maintain a better quality of life. Later in the afternoon, spouses and partners were treated to happy hour where they had an opportunity to get to know each other better.

At the RLDC, researchers and clinicians gathered in workshops to take a deeper dive into how to move research further for some of the rarest of lung diseases, while our LAM researchers and clinicians gathered for the annual International LAM Research Conference.

The conference closed on Sunday morning with a RLDC Conference Review for patients, family and friends. RLDC Co-Chairs, Robert Kotloff, MD and William Parks, PhD summarized all that took place during the research conferences and workshops. At the sane time, Daniel Dilling, MD, and Stephen Ruoss, MD, lead the researchers and clinicians through a LAM and Rare Lung Diseases Clinic Director’s Congress.

Breath of Hope Gala

This year’s Breath of Hope Gala was a complete sell out with over 410 people in attendance! And with a crowd like that, everything was “off the charts”!

Our Breath of Hope Silent Auction tables had 50 fabulous donated items up for bid, generating well over $9,000. That’s $4,000 + more than last year!

The ballroom walls were awash with the hot pink light from The LAM Foundation logo.

Dinner was served and we took the time to recognize past Board Chair, Laura Lentz, as our LAM Leader Award Winner. We also recognized members of our Board of Directors who are moving to the Emeritus Board and welcomed our new Board Members; Patti Bebien-Aronoff, Jilly Evans, MD, Lisa Henske, MD, Evan Pontz and Chuck Young.

Board Chair, Andrea Slattery, welcomed Kathi Hawn to the stage to award her with the Distinguished Fundraiser Award for hosting the successful annual SLAM LAM walk in her community, followed by the entire room thanking the newest members of the Breath of Hope Giving Clubs.

LAM Clinic Directors handed out roses to every woman with LAM in attendance and the Rose Ceremony photo was beautiful and moving.

As Jessica Dold, spouse of Jenn Turner Dold, sang “Time to Say Goodbye”, Sharlene Dunn had the honor of placing the white rose into the vase in memory of our friends and loved ones who are no longer with us.

Fund A Cure then kicked off with Jessica Dold singing the uplifting song “Brave”. Those in attendance raised their paddles to donate over $225,000 directly to LAM research in thirty minutes of pure generosity. Belinda Romney was the last person to raise her paddle to donate $50 for LAM Research and was awarded with a Longchamp purse!

This year’s Breath of Hope Raffle was also a huge success with over 300 tickets sold! The big winners….Marie and Dan Glasby!

And finally, Laura Lentz was welcomed back to the stage to accept the LAM Quilt as a thank you from all women with LAM, for her work, time and wisdom she has given to the Foundation community in her two terms as Board Chair.

The night concluded with our guests busting a move on the dance floor, enjoying the selfie station and giant games. Thanks to everyone in attendance for making this the most successful Breath of Hope Gala ever!

Mark Your Calendars! LAMPOSIUM Coast to Coast!



Join us in 2017 as we go Coast to Coast!

LAMposium East

Join The LAM Foundation for LAMposium in Washington, DC, June 22 – 25, 2017. This LAMposium will have both research and patient and family educational tracks as we do every year. Researchers and clinicians will meet with a focus on both LAM and Tuberous Sclerosis research. The patient & family sessions will address a wide range of topics pertinent to those living with LAM.  The entire LAM Community is welcome to connect and celebrate advances in LAM research at the Breath of Hope Gala. Conference format and session topics are currently being developed. More details coming soon.

LAMposium West

The LAM Foundation Community along with LAM researchers and clinicians will gather in Southern California in early November 2017. The focus of this research conference will be exploring topics and questions that, if solved, would improve the lives of women with LAM in five years or less. This conference will have a new format modeled after the 2014 LAM Biomarker Innovation Summit. We will also celebrate together at the Breath of Hope Gala. Details, location and dates will be announced soon!

Learn More about LAM Events in Your Area

Regional LAM Education meetings and Community Fundraising Events could be taking place near where you live! If you could not attend LAMposium or would like to re-connect with friendships you made at LAMposium, a regional LAM Education meeting is for you! LAM Liaisons from 8 regions are hosting meetings in the next two months. LAM Clinic Directors who attended the RLDC•2016•LAMposium will be there to share all of the exciting LAM research news!

Check out the Events Calendar on our website to find out more about our regional events.

Current Trials and Studies

Interested in participating in research?  Check out our Current Trials and Studies page on our website to learn more about how you can participate. 
Copyright © 2016 The LAM Foundation, All rights reserved.
March 2016 Currents
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