The LAM Foundation Annual Research meeting has been co-sponsored by the NHLBI since 1999. While the hallmark of the this unique meeting has always been the seamless integration of patients into every aspect of the conference, the format has been reinvented year after year by conducting joint conferences with the Rare Lung Disease Consortium and the Tuberous Sclerosis Alliance, moving the venue from Cincinnati to Chicago to Washington DC to Los Angeles, and by introducing thematic agendas. The first of these was the Biomarker Innovation Summit, a unique highly-interactive format that spawned six projects focused on development of tools to guide LAM diagnosis and management. The 2017 LAM Foundation International Lymphangioleiomyo- matosis Research Conference will be the second in this thematic series, focusing on translating the breath- taking scientific advances in lymphangioleiomyomatosis (LAM) of the last decade to Patient Benefit. We view this `translational obligation' as a donor mandate; ensuring that families who have raised hard earned dollars for research reap the benefits of their efforts in time to help their loved ones.
The Specific Aims of the LAM Foundation Patient Benefit conference, to be held at the LA Airport Westin November 9-12, 2017, will be four- fold: 1) to facilitate results-driven dialog among scientists, clinicians and patients aimed at identifying both patient needs and viable solutions across several modalities, 2) to identify new therapies or products that offer benefits within five years or less to patients living with LAM, 3) to inspire research and product development proposals that have potential to improve the treatment and/or quality of life for patients living with LAM, and 4) to raise money to fund the most promising research proposals. The conference will be roughly modeled after the LAM Foundation Biomarker Innovation Summit, with short talks alternating with breakout sessions populated by content experts and patients. Topics for the meeting will be largely derived from pre-meeting surveys of clinicians, scientists and patients who treat, study and live with LAM, respectively. Preliminary focus group feedback has indicated that shortness of breath, fatigue, limitation of activities and prognostic uncertainty are prominent issues for LAM patients. The Patient Benefit Steering Committee has invited a core of experts based on these initial responses, but the future invitations will be based on themes that arise from additional polls of patients and investigators. A combined patient/investigator social function, also called Patient Benefit (a variation on the annual Breath of Hope Gala), will take place at the event to raise funds for proposals generated at the meeting. At the conclusion of the meeting, participants will be asked to respond to a Request for Applications, and the most meritorious proposals will receive support from the Foundation. In this way, we hope to promote projects that are capable of yielding Patient Benefit in the short term, such as the use of biomarkers (including VEGF-D) for personalized dosing, use of cyst quantification as a biomarker of progression, and development of a preemptive approach to mental health care for the newly diagnosed.
The goal of the 2017 LAM Foundation International Lymphangioleiomyomatosis Research Conference called ?Patient Benefit? is to ensure that families who have donated monies for LAM Research will reap the benefits of their efforts for their loved ones in their lifetimes. The problems and thematic topics to be discussed will be gleaned from pre-meeting patient surveys and focus groups, and will be approached in a scientific manner by investigators and content experts invited to the meeting. A Request for Proposals will follow the meeting, and the LAM Scientific Advisory Board will fund the most meritorious projects.
