Patient & Family Educational Conference (LAMposium)

LAMposium is an annual conference, held on a weekend each spring, for LAM patients and their family members and friends.  Sessions are offered relating to various aspects of LAM, from learning about safe ways to exercise to using supplemental oxygen.  Doctors and scientists who are very knowledgeable about LAM give presentations to patients and their families.  Each session is followed by a discussion period where you can ask questions that your local doctors may not have been able to answer.

Click here to hear an audio recording of the sessions presented at LAMposium 2011.

Attending LAMposium has many advantages.  One of the biggest benefits is meeting and visiting with other women with LAM.  You’ll have time to get to know these women and to discuss problems with other women who are coping with the same issues and feelings you have. These friendships can be a huge social advantage and can offer a real psychological boost as well.

Patients also have a chance to sign up for a one-on-one appointment with a doctor who specializes in LAM.  Each 20-minute private session gives patients the opportunity to discuss their individual questions and concerns about their particular medical issue(s). These doctors have expertise in pulmonary issues, kidney tumors, TS and LAM, pregnancy, and counseling.

Scientific sessions for doctors and researchers run concurrently with the LAM patient sessions.  LAM scientists meet to explore new research directions, discuss what we’ve learned so far, and come to consensus on important issues that affect the lives of women with LAM. The doctors who attend LAMposium are committed to finding a cure for LAM!

On Friday evening, the Awards Banquet provides an opportunity for patients and physicians to come together.  Recognition is given to women with LAM who have inspired donations over $5,000 for research since last year’s conference. LAM Leader Awards are given to individuals who have consistently made extraordinary contributions to the LAM community.  The evening ends with a dessert social, giving patients, physicians and scientists a chance to mingle.

On Saturday night, the Breath of Hope Gala brings everyone together for dinner, dancing and socializing.  The Gala is one of the biggest fundraisers for LAM.  Gala attendees have a chance to bid on silent-auction items, buy raffle tickets, and raise their bid paddle during the inspiring Fund-a-Cure, where people pledge money in a wide range of amounts—money that is used strictly for research.  
On Sunday, the final day of the conference, the basic and clinical science chairs of the scientific sessions give an overview of what the physicians and researchers discussed during their sessions.  This overview ends the conference by giving everyone a feeling of encouragement and hope.

Here’s how one LAM patient described her first LAMposium experience, “It is an incredible experience to be surrounded by women who are experiencing the same things you are, and to have the doctors with the most LAM knowledge in the world available to answer questions and provide updates. I hate that I have this disease, but I am in awe at the amazing experiences I have had and the friends I have made because of the LAM Foundation and LAMposium.”

2012 Patient Session Overview

Patient sessions will be facilitated by an expert in their field who will also take questions from the audience. You may ask any questions you wish based on the session topic. Sessions will begin on Friday morning with an orientation for first-time attendees at 9:00AM, followed by the kickoff meeting at 9:30AM.

Friday afternoon will begin with a joint session with both doctors and patients to discuss LAM Clinics. Afterwards, patients will gather for roundtable discussions about topics such as oxygen, pregnancy and LAM, pneumothorax, and lung transplantation. Roundtable discussions for family members and friends will run concurrently. Friday afternoon sessions will conclude at 4:30 to allow adequate time to rest before the Awards Banquet that evening.

The Awards Banquet brings patients and physicians together to honor our new 2011 scientists.  Recognition will also be given to women with LAM who have inspired donations over $10,000 for research since last year’s conference. LAM Leader Awards will be given to individuals who have consistently made extraordinary contributions to the LAM community.  Dr. Frank McCormack, LAM Foundation Scientific Director, will give an overview of LAM research, followed by a dessert social, giving patients, physicians and scientists a chance to meet and mingle.

Sessions on Saturday will run from 8:30AM to 4:30PM and will include the following topics: Living With a Chronic Disease, Pneumothoraces & Pleurodesis, Pain Management, Managing Kidney Tumors (AMLs), Oxygen: Why, When & How Much, LAM & Tuberous Sclerosis, Nutrition and Dietary Supplements, Menopause & Beyond, LAM & Cancer, Lung Transplantation: Before & After, Exercise as a Prescription, and How To Be Your Own Patient Advocate.

Also on Saturday, you will have the opportunity to schedule a 20-minute, one-on-one meeting with a doctor of your choice to discuss any health topic(s) you choose. There will be a pulmonologist, neurologist, nephrologist, and psychologist available. A sign-up sheet will be available at the conference.

The Breath of Hope Gala on Saturday evening brings all attendees together for a celebratory evening offering a delicious dinner with complimentary beer and wine, open seating, music and entertainment.  It’s a wonderful celebration of life and hope.  The attire for the evening is best described as fine business.  Men typically wear a sport coat or suit while women usually wear a nice dress or evening pant suit.  The cost of the Gala on Saturday evening is included in your conference registration.  

Sessions on Sunday will begin at 9:00AM and end at noon.  Topics presented will include: Symptoms of LAM or Something Else, How to Talk to the ER Doctor, and an overview of the sessions conducted in the scientific part of the conference.  The Scientific Conference Chairs will explain current research strategies, what the physicians and scientists learned from their discussions, and possible future directions in LAM research.

Deadline for conference registration is March 30th.