LAMposium

What is LAMposium?  It’s a one-of-a-kind,3-day conference that offers patients the chance to learn about LAM and to connect with one another.  At the same time, physicians and scientists meet to share knowledge, exchange ideas, and collaborate on how to advance LAM research in the coming year.

LAMposium is an annual meeting held on a weekend (Friday, Saturday and Sunday) each spring.  LAM patients and their family and friends have the chance to attend educational sessions facilitated by experts in their field. Each session allows time at the end for questions based on the session topic.

Orientation for first time attendees begins on Friday morning followed by a kickoff meeting. During the afternoon, all conference attendees (patients, family, friends, physicians, and scientists) meet for a joint session to review and discuss current research updates. Afterwards, patients get together for roundtable discussions to talk about topics such as oxygen, pregnancy, pneumothorax, lung transplant, etc. Roundtable discussions for family members and friends are offered at the same time.

Sessions on Saturday typically run from 8:30AM to 4:30PM and include topics such as: Living With a Chronic Disease, Pneumothoraces & Pleurodesis, Pain Management, Pregnancy, Managing Kidney Tumors (AMLs), Oxygen: Why, When & How Much, LAM & Tuberous Sclerosis, Nutrition and Dietary Supplements, LAM & Cancer, Lung Transplantation: Before & After, and Exercise as a Prescription.

On Saturday patients also have the opportunity to schedule a 20 minute, one-on-one meeting with a doctor to discuss health topic(s)of their choice. Doctors available to meet with patients usually include a neurologist, nephrologist, psychologist and several pulmonologists.   

On Saturday evening all conference attendees are invited to attend the Breath of Hope Gala which includes a gourmet dinner, a live and silent auction, entertainment, dancing, and a chance to just relax and have fun.  

Sessions on Sunday begin at 9:00AM and end at noon.  The final session of the conference is an overview of the sessions conducted in the scientific part of the conference.  The chairs of the scientific sessions explain current research strategies, what the physicians and scientists learned from their discussions, and possible future directions in LAM research.

LAMposium is an opportunity to spend time with other women and family members who can relate to what you’re experiencing.  A patient described her LAMposium experience by saying “I always learn something new and interesting at LAMposium, whether it’s related to the science and research behind the disease, or how someone else is handling a certain issue.  It’s always good to connect with other women who share the same struggles and hopes. LAMposium is always a very positive experience!”

The registration fee for LAM patients to attend LAMposium is covered by  generous donor(s) while family members and friends pay $275 (this includes all conference materials, Friday lunch, Friday evening Awards Banquet, Saturday breakfast and lunch, Saturday evening Breath of Hope Gala, and Sunday breakfast). 

Below are the patient sessions presented at LAMposium 2013:

 

Title

Presenter

PowerPoint - Audio - Video

LAM 101:  The Basics Joel Moss, MD, PhD

Download
Play Audio

Targeting the P13K-mTOR Pathway in Clinical Trials
Lewis Cantley, PhD

Download
Play Audio

Fitness as a Way of Life Katie Helgeson, CPT Watch Video
Friday Awards Banquet

Frank McCormack, MD

Download
Pulmonary Rehabilitation – “Inspiration for Life” Sharon L. Balkenhol, RN, MSN, CNS, APN Download
Play Audio
Watch Video
LAM and TS Lisa Young, MD

Download
Play Audio

Oxygen: Why and When

Adrian Shifren, MD

Play Audio
Watch Video
Rates of Progression/Stages in LAM Joseph Lynch, MD
Download
Play Audio
Lung Transplantation - Making the Decision
Dan Dilling, MD
Download
Play Audio
How to Talk to Your Doctors About Your LAM

Khalid Almoosa, MD

Play Audio
Watch Video
PFT's, FEV1, DLCO.... What Do These Numbers Mean?

Emily Gilbert, MD

Download
Play Audio
Watch Video
Everything You Need to Know About Rapamycin Greg Downey, MD Download
Play Audio
Watch Video
Symptoms I Should Be Concerned About
Joseph Parambil, MD
Download
Play Audio
What is Quality of Life, How Does One Measure It, and Does It Matter In LAM
Jeff Swigris, DO, MS
Download
Play Audio
Lung Transplantation - Before and After
Dan Dilling, MD Download
Play Audio
Pulmonary Rehabilitation – “Inspiration for Life”

Marci Moreno, RN, MSN

Download
Play Audio
The Importance of Clinical Trials
George Pappas, MD

Download
Play Audio

Management of Pneumothorax / Chylothorax
Joseph Barney, MD

Download
Play Audio
Watch Video

LAM Myths: What is True and What is Not George Pappas, MD Download
Keeping Your Immune System / Bones Healthy Joseph Parambil, MD Download
Play Audio
Living Well With LAM Peggy Crawford, PhD Download
Play Audio
Overview of Scientific Sessions

Stephen Ruoss, MD

Download
Play Audio


Click here for Patient Program.

Click here for Scientific Program/Abstracts start on pg. 75.