Information for Professional Attendees

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

Patient Benefit Conference

The Patient Benefit Conference is an innovative meeting where patients and experts will collaborate to identify science-driven solutions to the most important mental and physical health issues LAM patients face every day, and develop plans to tackle those that can potentially be solved in less than five years. The conference will offer funding opportunities to promising proposals that present solutions.

The aims of the conference are four-fold:

  1. Facilitate results-driven dialogue among scientists, clinicians and patients aimed at identifying both patient needs and viable solutions across several modalities.
  2. Identify new therapies or products that offer benefits in five years or less to patients living with LAM.
  3. Request research and product development proposals that have the potential to improve the treatment and/or quality of life for patients living with LAM.
  4. Raise sufficient funds to put support behind the most promising projects within a few months of the meeting.

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.
  • New means to address the nature of fatigue in LAM and the potential links to tumor burden and sleep disorders.

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 a series of short presentations by patients describing the main themes of the conference as identified in a survey of LAM patients and LAM Clinic Directors. Each patient presentation will be followed by a reply from a thought-leader offering an overview of the state of the science and relevance to LAM. The plenary session is designed for all attendees including professionals and patients.

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.

In the 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 Workshop that hold the most potential to improve the quality of life for LAM patients.

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.

Download Detailed Agenda Here.


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 - 6:45 pm Welcome Yoga: Stress Reduction and Intention Setting
6:00 pm - 9:00 pm Conference Welcome Reception

Friday, November 10, 2017
7:00 am – 9:00 pm Registration Open
7:00 am – 8:00 am Breakfast
8:00 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 – 5:15 pm Educational Workshops: Biomarkers and LAM, Imaging and LAM
2:30 pm – 5:15 pm Educational Workshops: Exercise and LAM, Supplemental Oxygen and LAM and Coping and Mental Wellness
5:15 pm – 8:30pm Friday Evening Mixer – All Attendees

Saturday, November 11, 2017
7:00 am - 7:45 am Meditation and Gentle Movement
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 Conference – Solution Workshops
1:00 pm – 2:00 pm LAMposium LA – Patient and Family Sessions
2:00 pm – 3:00 pm Closing Plenary Session – Presentations and Reports
3:00 pm - 3:20 pm Break
3:20 pm - 4:30 pm Closing Plenary Session - Presentations and Reports
6:00 pm – 12:00 am Breath of Hope Gala

Sunday, November 12, 2017
8:00 am - 9:00 am Morning Yoga

Who Should Attend?plus

This conference is designed to appeal to a wide range of LAM experts:

  • Radiologists and thoracic imaging professionals with an interest in LAM will work together to determine how imaging can be used to better assess patients with LAM;
  • LAM Clinic Directors, patient care team members and respiratory therapists will be able to learn and contribute their expertise in the clinical needs of women with LAM;
  • Integrative medicine and fatigue experts, exercise physiologists, psychologist and mental health professionals with an interest in coping and chronic conditions will be interested in exploring the intricacies of how LAM patients face these problems;
  • Graduate students or fellows interested in learning more about any of these issues are also welcome;
  • Data engineers and app developers are needed to help address problems around tracking disease progression and helping patients communicate effectively with their care team through online apps, home spirometry and using patient reported outcomes for research;
  • Patients are necessary to add their experience and expertise to the conversation.

LAM Patient Benefit Grant Programplus

The LAM Foundation Patient Benefit Grant Program (PBGP) has been created for the purpose of awarding grants for the most promising ideas generated at the Patient Benefit Conference. Funds raised during the Breath of Hope Gala on Saturday evening will support the PBGP.

Mission of the Patient Benefit Grant Program
To fund proposals that have the potential to result in present-day solutions that have a positive impact on the diagnosis, care or quality of life of patients with LAM.

Guidelines

  • Patient Benefit Grant awards are restricted to projects that propose solutions that will benefit patients in five years or less.
  • Patient Benefit Grant awards provide one year of funding, and range from $5,000 to $50,000.
  • Candidates must have appropriate experience/expertise. Proposals are welcome from all professionals, from engineers, to respiratory therapists, physicians and scientists.
  • Investigators of all nationalities are eligible, but candidates must possess visas that allow for completion of the proposed project at the initiating organization.

The RFA Process
The RFA will be sent in December 2017 with proposals due in late January. Awards will be announced by March 30, 2018 or before. More details to follow at www.thelamfoundation.org.

Publications
Publications based on any study or research done during the period of support should acknowledge the support of The LAM Foundation, and a reprint should be sent to The LAM Foundation office. Periodic progress reports are required and must be completed to assist the Foundation in shaping future policies with respect to its award program.

Format:

  1. The Proposed Research section of the online grant application for all LAM awards is limited to 10 pages, not including references and figures.
  2. Basic science and clinical proposals should follow the format listed below:
    a. Hypotheses and specific aims
    b. Literature review, preliminary data
    c. Research plan; experimental methods
    d. Significance, importance
  3. Innovative product proposals should follow the format listed below:
    a. Description of program/project including:
    - Description of product aims
    - Brief explanation of this program/project will provide a LAM patient benefit in 5 years or less
    - Describe how your project was designed. Site the best practices or theory of change involved.
    - Time table for implementation and duration of the program/project
    b. List the collaborators of this program/project and describe their roles.
    c. What are the strengths that your team is positioned to offer to address this challenge or need?
    d. Describe the transformational impact you expect to achieve with this grant?
    e. Describe how success will be measured.
    f. Describe the risks involved in your project and the risk mitigation strategies you anticipate employing.
    g. What kind of technical assistance do you anticipate needing to accomplish your goals?

Factors Considered in Evaluation of Applications
Applications are reviewed by a subcommittee of The LAM Foundation Scientific Advisory Board.
Factors considered when selecting awardees are:

  1. Scientific or clinical merit of the research or product proposal.
  2. Relevance to topics identified by LAM patients as their top priority and discussed at the Patient Benefit Conference as outlined here:
    • 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.
    • New means to address the nature of fatigue in LAM and the potential links to tumor burden and sleep disorders.
  3. Cost efficiency (see below*)
  4. Expertise and commitment of applicant
  5. Research environment

*As the amount of money is limited and the number of proposal we would like to fund will clearly exceed our resources, we ask that applicants hone budgets to amounts absolutely required to complete projects. Cost efficiency will be considered along with scientific merit in all funding decisions.

Examples of allowed costs:

  • Technician or fellow effort
  • Coordinator effort
  • Supplies, reagents, external vendor fees
Examples of costs that are discouraged:
  • PI effort
  • Travel

Patient Benefit Conference Steering Committeeplus

The LAM Foundation would like to thank the members of the Patient Benefit Steering Committee for their expertise and guidance in creating this unique conference:

Chairman: Francis X. McCormack, MD, University of Cincinnati, The LAM Foundation Scientific Director
Nishant Gupta, MD, University of Cincinnati, LAM Clinic Director
Sue Sherman, MHA, The LAM Foundation, Executive Director
Kim Hasselfeld, The LAM Foundation, Scientific Program Coordinator
Joseph Lynch, MD, UCLA, LAM Clinic Director

Additional Conference Meetings and Activitiesplus

The LAM Foundation Scientific Advisory Board Study Section - Members of the SAB will meet to review submissions to The LAM Foundation's 2017 Grant Program.

Welcome Reception - This networking reception will be a chance to connect with colleagues and meet others who will be attending. Light snacks will be served and a cash bar will be available.

Opening Plenary Session - Researchers, clinicians, knowledge experts, patients and family members will begin this two-day conference in an Opening Plenary Session where all attendees will hear a series of short presentations by patients describing the main themes of the conference as identified in a survey of LAM patients and LAM Clinic Directors. Each patient presentation will be followed by a reply from a thought-leader offering an overview of the state of the science and relevance to LAM. The plenary session is designed for all attendees including professionals and patients.

Educational Workshops - These Educational Workshops will allow all attendees to continue learning about the topics they find most important. Workshops topics will include Biomarkers and LAM, Imaging and LAM, Exercise and LAM, Supplemental Oxygen and LAM and Coping and Mental Wellness.

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. Participants will be encouraged to organize and recruit attendees to the solutions workshops that will convene on Saturday morning.

Solutions Workshops - As a follow-up to the Friday educational sessions, researchers, clinicians, thought leaders and patients participate in Solutions Workshops that have a goal of identifying new ideas and solutions that will offer benefit to patients 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 Workshop that hold the most potential to improve the quality of life for LAM patients.

Breath of Hope Gala - The Breath of Hope Gala is attended by women with LAM, their families, friends, the scientific and medical LAM community and local LAM supporters. Join us for dinner and dancing, a silent auction, the Rose Ceremony and one of the largest annual fundraisers for LAM research, Fund A Cure. Money raised during Fund A Cure will fund projects proposed as a result of the Patient Benefit Conference. The Gala is included in conference registration. For more details on the Breath of Hope Gala, or to purchase Gala-only tickets, CLICK HERE.

Yoga and Meditation - All conference attendees are welcome to participate in several mindfulness and yoga sessions throughout the weekend. Start the conference on a positive note by attending our Welcome Yoga: Stress Reduction and Intention Setting session on Thursday evening. Saturday morning, we will begin with Meditation and Gentle Movement session. End the conference on Sunday with Morning Yoga. All levels are welcome and no prior experience is necessary.

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