Posted on October 19, 2016 |
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 same time, Daniel Dilling, MD, and Stephen Ruoss, MD, led the researchers and clinicians through a LAM and Rare Lung Diseases Clinic Director’s Congress.