Information for Patients, Family and Friends

NOVEMBER 9-12, 2017
The Westin Los Angeles Airport
5400 West Century Boulevard
Los Angeles, CA 90045
(310) 216-5858

“Walk in my shoes for a day. Feel what I feel. Know what I know. Breathe how I breathe.
Do what I do to survive and get through my day.” - LAM patient

The Patient Benefit Conference is a patient-inspired conference, where patients and experts will collaborate to identify new solutions to address mental and physical health issues that LAM patients have defined as most important and relevant to them.

To help us prepare for the conference, we sought advance insights from LAM patients and LAM Clinic Directors via an online survey. Based on the results, the following themes are being considered for workshops that will focus on finding solutions to help LAM patients in a relatively short time frame (five years or less):

  • New imaging technologies to quantify the volume of cysts in the lungs or quantify other lung changes as a means of measuring LAM progression, or assessing treatment response.
  • Identification of new predictive and prognostic biomarkers for LAM; development of a LAM-specific severity scale and studies to further define the various disease-specific phenotypes which can impact the natural history as well as the treatment response among patients with LAM.
  • Creation of patient tools for tracking disease progression and communicating effectively with their care team – online apps, home spirometry, patient reported outcomes, etc.
  • Improvements in oxygen therapy and technology, enhanced understanding of the impact of shortness of breath and chest pain on the quality of life of LAM patients and the role of exercise in LAM patients.
  • Development of tools to help LAM patients cope with anxiety, fear and depression.

Patient Benefit Conference

Join us for a unique opportunity to be a part of the solution!

The Patient Benefit Conference will introduce a new meeting structure designed to cultivate collaboration between LAM patients and professionals. The weekend will offer a variety of presentations and workshops where patients and professionals will work together to create products or services that could benefit LAM patients in five years or less. Patients and families will have the option to participate in plenary sessions, solutions workshops and social events with LAM scientists, clinicians and innovative thinkers.

At the closing plenary session, teams will present proposals that identify new studies, products or services to improve the lives of women living with LAM. On Saturday evening, celebrate all our hard work at the Breath of Hope Gala as we raise our paddles at Fund A Cure to support these promising projects.

LAMposium LA

Patient and Family Educational Sessions

LAMposium LA, our traditional LAM Patient and Family educational conference, will run concurrently with the Patient Benefit Conference and will offer sessions led by LAM experts. Attendees will have the option to choose between LAMposium LA sessions and Patient Benefit workshops.

LAMposium LA topics may include:

  • Oxygen Equipment Demonstration
  • LAM 101
  • Integrative Medicine and Coping Strategies
  • Exercise and LAM
  • Fundraising Ideas
  • Chest Pain and LAM
  • Clinical Trial Updates

Conference Agendaplus

Researchers, clinicians, knowledge experts, patients and family members will begin this two day conference in an Opening Plenary Session where all attendees will hear directly from patients about the most challenging aspects of living with LAM, followed by brief scientific and clinical presentations addressing current science, therapies and technology that are available to address patient needs. Scientists and clinicians will convene for additional updates and presentations related to LAM science and the issues presented by the patients, while patient and family members attend LAMposium sessions.

During the conference, attendees will choose between several Solutions Workshops where they will be tasked with developing and refining proposals to identify new studies, products or services that address issues that patients want solved in the short term. Concurrently, patients will also have the opportunity to attend educational sessions led by LAM experts.

In the closing plenary session, workshop leaders will present the most promising proposals that were generated in the workshops.

Enthusiasm and hope generated from these presentations will carry over to inspire attendees at the Breath of Hope Gala, where they will be encouraged to donate to Fund A Cure and generate funds to support the most promising projects.

Conference Agenda

Thursday, November 9, 2017
8:00 am - 1:00 pm Scientific Advisory Board Study Session - 2017 Grants
2:00 pm - 5:30 pm The LAM Foundation Board of Directors Meeting
4:00 pm - 9:00 pm Registration Open
6:00 pm - 9:00 pm Conference Welcome Reception

Friday, November 10, 2017
7:00 am – 9:00 pm Registration Open
7:00 am – 8:30 am Breakfast
8:30 am – 12:00 pm Opening Plenary Session - All Attendees
12:00 pm – 1:00 pm Lunch
1:00 pm - 2:15 pm LAM Community Celebration - Patient and Family Sessions
1:00 pm – 5:30 pm Patient Benefit Conference – Professional Sessions
2:30 pm – 5:30 pm Patient Priorities – Patient and Family Sessions
5:30 pm – 7:30pm Friday Evening Mixer – All Attendees

Saturday, November 11, 2017
7:00am – 9:00pm
7:00 am – 8:00 am Breakfast
8:00 am – 12:00 pm Patient Benefit Conference – Solution Workshops
8:00 am – 12:00 pm LAMposium LA – Patient and Family Sessions
12:00 pm – 1:00 pm Lunch
1:00 pm – 2:00 pm Patient Benefit Research Conference – Solution Workshops
1:00 pm – 2:00 pm LAMposium LA – Patient and Family Sessions
2:00 pm – 3:00 pm Closing Plenary Session – Solutions Workshops: Presentations and Reports
3:00 pm - 3:30 pm Break
3:30 pm - 4:30 pm Closing Plenary Session - Solutions Workshops: Presentations and Reports
6:00 pm – 12:00 am Breath of Hope Gala

LAMposium LA Highlightsplus

Conference Welcome Reception – Everyone is welcome to gather Thursday evening to connect with old friends and meet new friends. Light snacks and a cash bar will be provided.

Opening Plenary Session – A panel of LAM patients will share their personal challenges of living with LAM. Professionals will talk about how these challenges are currently being managed in scientific and clinical settings. This session will provide context and background information for researchers, clinicians, thought leaders and patients as they move into Solutions Workshops the next day.

LAM Community Celebration – Patients with LAM, family and friends will come together Friday afternoon to learn how to get the most out of the Patient Benefit Conference, hear highlights on LAMposium LA and get a chance to meet other women with LAM who are in attendance.

Friday Evening Mixer – Designed as a key element of the Patient Benefit Conference, professional attendees will join LAM patients and family attendees to share additional insights into the challenges patients face every day and brainstorm potential solutions. Participants will be encouraged to organize and recruit attendees to the solution workshops that will convene on Saturday morning. Light snacks and a cash bar will be provided.

Roundtable Discussions – Join LAMposium LA experts for small group discussions where patients and families can ask questions and share their experiences in more detail.

Solutions Workshops – Researchers, clinicians, thought leaders and patients will use what they learned during the Opening Plenary Session and the Friday Evening Mixer about the challenges patients with LAM are facing to create proposals that offer solutions in five years or less. Participants will use the concepts of design thinking to develop and refine their ideas and put together proposals. The ideas with the most potential will be presented during the Closing Plenary Session and will be eligible to receive a Patient Benefit Grant.

Closing Plenary Session – Researchers, clinicians, thought leaders and patients have spent the weekend developing ideas, potential products and trials that could help LAM patients within the next five years. During this session, groups will present the ideas from the Solutions Workshops that hold the most potential to improve the quality of life for LAM patients.

Breath of Hope Gala – Join us Saturday evening for an inspiring celebration! The Breath of Hope Gala is a fundraising tradition for the LAM Community and The LAM Foundation. The Gala is attended by patients with LAM, families, friends and the scientific and medical LAM community. Join us for dinner and dancing, a silent auction, the Rose Ceremony and one of the largest fundraisers for LAM research, Fund A Cure. Money raised for Fund A Cure will fund projects generated from the Patient Benefit Conference. The Gala is included in your conference registration. For more details on the Breath of Hope Gala, or to sponsor a table, CLICK HERE.

Step and Repeat – Create memories with friends in front of The LAM Foundation’s photo backdrop. Increase LAM Awareness by posting your photos on Twitter and Facebook, using the hashtags #LAMposium #2017LAMposiumLA.

Breakfast and Lunch – Friday and Saturday, researchers, clinicians, patients, family and friends are all welcome to connect while sharing a meal together.

Preliminary Sessions and Speakersplus

  • LAM 101
  • Lung Transplant Journey
  • Getting the Most out of Your LAM Clinic Visit
  • LAM Clinic Trials: How Do I Decide
  • Pneumothorax: What to Watch Out for and When to Have Pleurodesis

Travel Tipsplus

Hotel Information

The Westin Los Angeles Airport
5400 West Century Boulevard
Los Angeles, CA 90045

To register, Click here or call (310) 216-5858.

Hotel room rates are $149.00 per night for a Single or Double room. Hotel room rates are subject to applicable state and local taxes (currently 15.77%) in effect at the time of check-out.

When booking your hotel room, keep in mind conference activities run from Thursday evening through late Saturday evening. As such, you may wish to arrive on Thursday, November 9, and depart on Sunday, November 12.

You can call the Westin Los Angeles Airport directly for reservations at 310-216-5858. Mention the “Patient Benefit Conference and LAMposium LA” to qualify for the discounted room rate of $149.00 per night. To receive this discounted room rate, you must make your reservation before 5:00pm PST, Wednesday, October 25, 2017.

A free Westin Los Angeles Airport shuttle service will take you directly to and from hotel. Look for the blue shuttle with Westin LAX displayed on the scrolling sign at the “Hotel Courtesy Shuttle” islands outside baggage claim at each terminal. No reservations are required. Please call (310) 216-5858 with additional questions.

Supplemental Oxygen

If you need supplemental oxygen therapy, please pre-order your oxygen through your standard oxygen supplier and make sure your oxygen is delivered to the front desk of the Westin Los Angeles Airport with your name on the order.

What to Wear

The afternoon high temperatures are in the mid-70s F (23C) while the morning lows fall into the mid-50s F (10C). The conference will take place in hotel conference rooms. Generally, attendees wear comfortable casual clothing. If you are prone to get chilly in a conference room setting, bring along a sweater, sweatshirt or pashmina. Dress for the Breath of Hope Gala is cocktail attire. Bring your dancing shoes!