Recap: RLDC•2018 & LAMposium

From September 6-9, 2018, the Northern Kentucky Convention Center transformed into a hub for rare lung diseases research. More than 400 researchers, clinicians, individuals with rare lung diseases, family members, patient advocacy partners, and sponsors filled the halls. One common goal brought us all together: Finding answers for those who live with these diseases. 

The weekend focused on a central question: What are the potential impacts of cutting-edge technologies in rare lung diseases research? An equal mix of patients and scientists met in the Cincinnati area, stepping out of their everyday routines and gathering in the same room, to explore the answers to this powerful question. 

If you were able to join us for the weekend, you saw firsthand the remarkable work we achieved. If you were unable to join us, you were still very much a part of the ideas that were shared—and we would like to share them now with you. 

Opening Sessions & Celebration

Attendees gather at the Opening Ceremony.

Thursday evening began the momentum as attendees arrived from far and wide. Patients set positive intentions for the conference during an evening yoga session with Stacey Bickler, who continued to offer sessions each morning. Laura Esther Wolfson hosted a book signing for her memoir, “For Single Mothers Working as Train Conductors,” sharing stories of her diagnosis and journey with LAM. In the ballroom, everyone gathered to enjoy appetizers, drinks, and conversations that lasted well into the night.

Friday began with an early-morning welcome for researchers and clinicians from RLDC Scientific Chairs Bruce Trapnell, MD and Frank McCormack, MD. The co-chairs introduced James Kiley, PhD, of the National Heart, Lung, and Blood Institute, for the opening address on the NHLBI’s commitment to partnership and progress in rare lung disease research. The group then settled in for rapid intensive sessions on rare lung diseases and technology, including personalized medicine, lung imaging, and single-cell analysis.  

Over at LAMposium, Susan Sherman, MHA, CEO of The LAM Foundation, gave a warm welcome to patients, family, and friends in the Opening Celebration. Next, Dr. Frank McCormack gave an informative and essential talk on the "Top 10 Things to Know About LAM." Attendees then dispersed to learn about a variety of topics, including clinical trials, surgical interventions, and caregiving techniques.

Friday Night Banquet & Continued Learning

Friday evening at the Rare Lung Diseases Consortium Celebration Banquet, attendees enjoyed dinner and dynamic presentations with a theme of “Partnering for Progress.” Speakers focused on patient advocacy, collaborative research, and community partnerships. Three rare lung diseases researchers were given Best Poster Awards to recognize their prolific work. The night ended with an energetic and creative performance by the HPS Singers, “Girls Just Wanna Have Lungs.”

Saturday morning began with researchers and clinicians focusing on interstitial lung diseases, followed by workshops on specific rare lung diseases. LAM, PAP, PLCH, Sarcoidosis, Alpha-1, NTM, and PF were all represented.

LAMposium gave patients, family, and friends many opportunities to choose the topics they wanted to learn about. Sessions focused on research updates, fundraising ideas, lung transplants, quality of life, and self-advocacy. In the afternoon, spouses and partners gathered for happy hour, where they swapped stories and made new connections.

Breath of Hope Gala & New Records

Raising bidding paddles at the Breath of Hope Gala.

Attendees donned mysterious masks and fanciful dress for this year’s Breath of Hope Gala! Following the masquerade theme, everyone got in on the fun for a memorable night of fundraising.

A bustling silent auction and cocktail reception set the tone for a spirited dinner. The evening’s program included notes from CEO Sue Sherman on the power of the LAM community and awards recognizing contributions to LAM research. The LAM Foundation Scientific Advancement Award, one of our most prestigious, was presented to Dr. Angelo Taveira-DaSilva for his dedication to LAM.

Over 115 women with LAM participated in the traditional Rose Ceremony, and Board Chair Andrea Slattery spoke to the importance of funding LAM research. Auctioneer Richard Craney kicked off Fund A Cure, which featured donor testimonials, prizes, and matching gift levels.

Between the silent auction, Fund A Cure, and matching donations, The Breath of Hope Gala raised over $271,500 – a new record! The party continued with dancing and a renewed spirit of hope.

Thank you to all who supported this wonderful evening, along with the entire RLDC•2018 & LAMposium conference. 

Our strength as a connected group of scientists and patients is the key to our impressive pace of discovery. Together, with generous industry and public support, we will continue to bring hope to people with rare lung diseases around the world.