LAMposium DC
Information for Patients, Family & Friends

JUNE 22 - 24, 2017
Hyatt Regency Washington on Capitol Hill
400 New Jersey Avenue NW
Washington, DC 20001
(800) 233-1234


Check out our preliminary schedule for the LAMposium DC Patient, Family & Friends sessions.

2017 LAMposium DC & Regional TSC Conference

LAM and TSC patients, family and friends are invited to attend a variety of educational sessions designed to inform and inspire. LAMposium DC begins on Friday morning, June 23, 2017. Join us for two days of presentations led by national experts that include topics such as disease and treatment fundamentals, LAM research trial updates, hormone management, LAM & TSC genetics, hands-on oxygen equipment demonstrations, the evolving health insurance landscape, integrative medicine modalities and more. We will also host roundtable discussions, led by experts who can answer personal questions in more detail.

On Saturday, June 24, LAMposium DC continues and will run concurrently to the Regional TSC Conference. Additional education sessions will provide information on the latest treatment and testing options, basic and translational research updates, and support options. There will be separate sessions devoted to different age groups and needs: pediatrics, transition age, and adults with TSC and LAM.

Saturday sessions will conclude with a Joint Session welcoming ALL patients and family members to join the research conference participants for a summary of weekend’s research activities and a look at what lies ahead.

Pre-Conference Activitiesplus

Patient-Focused Drug Development (PFDD) Meeting – Join The LAM Foundation and the TS Alliance on Wednesday, June 21 for an interactive and informative meeting with the FDA where patients will share what matters most to those with a rare disease and what treatments are needed. Representatives of the FDA will be present to hear the patient’s voice as they continue to work on developing and approving new drugs. All are welcome to join us in person or through an interactive webinar. You will be able to share your experience though live polling as the meeting is taking place. Click here to register for both the in-person meeting and to attend the live webcast. For more information contact Anne McKenna at amckenna@thelamfoundation.org.

LAM Day on Capitol Hill – Make sure your voice is heard. Join The LAM Foundation as we meet with members of Congress and help them understand LAM and what it means to live with the disease. On Thursday morning, we will hold an in depth training session where you will learn how to share your LAM journey with your representatives on Capitol Hill. On Thursday afternoon and Friday morning, join the LAM community as we put that training to use and “March on the Hill” for meetings with as many congressional representatives as possible. If you're interested in participating, register here or contact Anne McKenna at amckenna@thelamfoundation.org.

LAMposium DC Highlightsplus

Thursday Social for Patients, Family and Friends –Everyone is welcome to gather Thursday evening to connect with old friends and meet new friends.

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

Scientific Posters - Spend time reading about TSC and LAM research. All posters will be located in the Hyatt Regency Foyer and available for everyone to review from 2:00pm on Thursday to 4:30pm on Friday.

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 women with LAM, families, friends and the scientific and medical LAM community. Join us for dinner and dancing, a silent auction, interactive festivities, the rose ceremony and the single largest annual fundraiser for LAM research, Fund-A-Cure. In 2016, Fund A Cure raised more than $200,000 for LAM research in less than 30 minutes!The Gala is included in your conference registration. For more details on the Breath of Hope Gala, or to purchase Gala-only tickets, click here.

Step and Repeat – Take your picture 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 #2017LAMposiumDC.

LAM Liaison Meeting - We invite our LAM Liaisons for lunch on Friday at 11:00am in Bunker Hill to share ideas on successful regional meetings and receive helpful information from the Foundation to share with their regional LAM community.

LAM Day on Capitol Hill - Make sure your voice is heard. Join The LAM Foundation as we meet with members of Congress and help them understand LAM and what it means to live with the disease. On Thursday morning, we will hold an in depth training session where you will learn how to share your LAM journey with your representatives on Capitol Hill. On Thursday afternoon and Friday morning, join the LAM community as we put that training to use and “March on the Hill” for meetings with as many congressional representatives as possible. If you're interested in participating, register here or contact Anne McKenna at amckenna@thelamfoundation.org.

Patient-Focused Drug Development Meeting (PFDD) - Join The LAM Foundation and the TS Alliance on Wednesday, June 21 for an interactive and informative meeting with the FDA where patients will share what matters most to those with a rare disease and what treatments are needed. Representatives of the FDA will be present to hear the patient’s voice as they continue to work on developing and approving new drugs. All are welcome to join us in person or through an interactive webinar. You will be able to share your experience though live polling as the meeting is taking place. Click hereto register for both the in-person meeting and to attend the live webcast. For more information contact Anne McKenna at amckenna@thelamfoundation.org.

Regional TSC Conference - On Saturday, the TS Alliance is hosting a regional conference alongside LAMposium DC, you will have a chance to hear from leading experts on TSC. We will provide information on the latest treatment and testing options, basic and translational research updates, and support options. There will be separate sessions devoted to different age groups and needs: pediatrics, transition age, and adults with TSC and LAM.

Roundtable Discussions - Continue the conversation at Roundtable Discussions lead by experts who can answer your questions in further detail.

Joint Session - The final session of the conference offers a unique educational experience designed for all conference attendees including scientists, clinicians, patient and families. A speaker and topic for this session will be announced soon.

Preliminary Speakers and Topicsplus

YOGA
Kat Steele, LAM Patient

FIRST TIME ATTENDEE ORIENTATION
Marla Hamlin, LAM Liaison

LAM 101
Charlie Strange, MD, Medical University of South Carolina

Approach to Pneumothorax and Pleurodesis
Nishant Gupta, MD, University of Cincinnati Medical Center

Exercise and Pulmonary Rehabilitation
Rebecca Crouch, DPT, MS, PT, Duke University Health System

LAM Clinic Roadmap
Lisa Young, MD, Vanderbilt University Medical Center

LAM RESEARCH UPDATES: MIDAS, MILED AND OTHER OPEN TRIALS
Francis X. McCormack, MD, University of Cincinnati Medical Center

OXYGEN EQUIPMENT DEMONSTRATION
Susan Jacobs, RN, MS, Stanford University Medical Center
Beverly Jackson, LAM Liaison

DRUG THERAPY FOR LAM
Maryl Kreider, MD, University of Pennsylvania

WOMENS’S HEALTH FORUM
Stephen Hammes, PhD, University of Rochester School of Medicine
Lisa Halvorson, MD, Gynecologic Health and Disease Branch Chief at the NIH

CT SCANS: GETTING MORE FROM LESS
Joel Moss, MD, PhD, National Heart, Lung and Blood Institute, at the NIH

RENAL INVOLVEMENT IN TSC AND LAM
John Bissler, MD, Le Bonheur Children's Hospital

THE HEALTH INSURANCE LANDSCAPE
Evan Pontz, Esq, Troutman Sanders

LUNG TRANSPLANT: THINGS TO CONSIDER ON YOUR JOURNEY
Cathy Cantilena, MD, National Institutes of Health
Marla Hamlin, LAM Liaison

More topics and speakers coming soon!

Travel Tipsplus

Hotel Accommodations
Hyatt Regency Washington on Captiol Hill
400 New Jersey Avenue NW, Washington, DC 20001
FOR RESERVATIONS
Visit: https://resweb.passkey.com/go/tsclamintlreschconf
Call: (800) 233-1234

Hotel room rates are $199.00 per night for a Standard Deluxe Room or Deluxe Room with Double Beds. Hotel room rates are subject to applicable state and local taxes (currently 14.5%) in effect at the time of check-out.

When booking your hotel room, keep in mind conference activities run from Thursday through late Saturday evening. As such, you may wish to arrive on Wednesday, June 21st, or Thursday, June 22nd, and depart on Sunday, June 25th.

You can also call the Hyatt Regency directly for reservations at (800) 233-1234. Mention the “TSC and LAM International Research Conference” to qualify for the discounted room rate of $199.00 per night. To receive this discounted room rate, you must make your reservation before Thursday, May 25, 2017.

Ground Transportation - Below are estimates for transportation to and from each airport. CLICK HERE for a comprehensive list of transportation options to the hotel.

Reagan National Airport (5 miles from the Hyatt Regency):
Taxi Fare: Estimated $22 one way
Uber Fare: Estimated $15 one way
Metro: Exit Union Station, Red Line

Dulles International Airport (28 miles from the Hyatt Regency):
Taxi Fare: Estimated $90 one way
Uber Fare: Estimated $42-$54 one way
Metro: Washington Flyer Bus service from airport to Silver Line

Baltimore/Washington International Thurgood Marshall Airport (35 miles from the Hyatt Regency):
Taxi Fare: Estimated $97 one way
Uber Fare: Estimated $42-$54 one way

Supplemental Oxygen - If you are in need of 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 Hyatt Regency Washington on Capitol Hill with your name on the order.

What to Wear - The afternoon high temperatures generally reach the mid to upper 80s F (30-32C) while the morning lows fall into the upper 60s F to near 70F (20-21C). 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 evening attire.

If you need assistance with any of your arrangements or have any questions, please call us at The LAM Foundation at (877) 287-3526 or email us at info@thelamfoundation.org.