INFORMATION FOR PATIENTS,
FAMILY & FRIENDS

SEPTEMBER 22 – 25, 2016
NORTHERN KENTUCKY CONVENTION CENTER
COVINGTON, KENTUCKY

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

PRELIMINARY LAMPOSIUM SPEAKERS AND TOPICSplus

FIRST TIME ATTENDEE ORIENTATION
Marla Hamlin, LAM Liaison

LAM 101
Souheil El-Chemaly, MD, Brigham and Women’s Hospital

RISKS AND BENEFITS OF DRUG THERAPY FOR LAM
Simon Johnson, Professor, University of Nottingham

TOP 10 THINGS TO KNOW ABOUT LAM RESEARCH & HOW YOU CAN PARTICIPATE
George Pappas, MD, Swedish Medical Center

PNEUMOTHORACES IN LAM: TREATMENTS, COMPLICATIONS AND BEST APPROACHES TO BOTH
Dan Dilling, MD, Loyola Medical Center

OVERVIEW OF LAM RESEARCH AT THE NIH
Joel Moss, MD, PhD, National Heart, Lung and Blood Institute, at the NIH

GENETICS AND LAM + GWAS: WHAT HAVE WE LEARNED FROM CHEEK SWABS
David Kwiatkowski, MD, PhD, Dana-Farber Cancer Institute/BWH

PORTABLE OXYGEN UPDATE AND TRENDS FOR THE FUTURE
Susan Jacobs, RN, MS, LAM Clinic Coordinator, Stanford University Medical Center

AMERICANS WITH DISABILITIES ACT: WHAT ARE YOUR RIGHTS?
Evan Pontz, Esq, Troutman Sanders LLP

LUNG TRANSPLANTATION FOR LAM: CHALLENGES AND SUCCESSES
Charles Burger, MD, Mayo Clinic Jacksonville

MANAGEMENT OF ANGIOMYOLIPOMAS OF THE KIDNEYS
Janet Boyle, MD, University of Cincinnati Health

HORMONES AND LAM: UNDERSTANDING THE IMPLICATIONS ACROSS A LIFETIME
Lisa Larkin, MD, University of Cincinnati Health
and Stephen Hammes, MD, PhD, University of Rochester Medical Center

COMBINED SESSIONSplus

Thursday Evening Welcome Receptions & Conference Kickoff Presentation - Two concurrent welcome receptions, one for professionals and one for patients, friends & family will be held Thursday evening. Everyone is welcome to hear the Kickoff presentation by David Fajgenbaum, MD, MBA, Assistant Professor of Medicine, University of Pennsylvania and Executive Director, Castleman Disease Collaborative Network. Dr. Fajgenbaum will speak about "Overtime," which he believes he has been in, ever since he had his last rites read to him in November 2010 while battling idiopathic multicentric Castleman disease.

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

Scientific & Community Posters - Spend time reading about recent rare lung disease research and findings, LAM research and LAM Community events. All posters will be located in the Convention Center’s lobby.

Rare Lung Disease Consortium Celebration Banquet –Celebrate the successes achieved through the collaboration of scientists, clinicians, patients and advocacy organizations at a dinner in their honor. Frank McCormack, MD, Conference and Scientific Chair of RLDC 2016will host this dinner and welcome special guest speaker Frank Sasinowski, MS, MPH, Director at Hyman, Phelps and McNamara who will present on his experience with the FDA and advancing orphan drug development.

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, a raffle, the rose ceremony and the single largest annual fundraiser for LAM research, Fund A Cure. In 2015, Fund A Cure raised over $200,000 for LAM research in less than 30 minutes! 100% of all proceeds from Fund A Cure will be donated to LAM research.

Sponsor a table on behalf of your family and friends or your company at the Breath of Hope Gala! Table sponsorship includes dinner for 10 (at a savings of $250), recognition in the Gala program, and an inspiring evening at The LAM Foundation’s largest annual fundraiser.

HIGHLIGHTSplus

Spouse and Partner Happy Hour - Connect with others who care for loved ones with LAM. This gathering will be planned specifically to allow for spouses and partners to get to know each other in a casual atmosphere.

LAM Quilt - It's Quilt Time X 2! This year, Stacey Wheelus is creating two small quilts instead of one large quilt: a traditional quilt using fabric squares, and one with fabric lungs. Click here to get instruction on how you can add your personal touch to one or both of the quilts.

Remembrance Room - Reflect and remember in this special room to honor the many beautiful women who have passed away from LAM since 1990. They touched our hearts, supported the LAM Community, worked for and dreamed of a cure. The Remembrance Room is open to everyone.

Research Room - LAM and rare lung disease researchers will provide education about open clinical trials and research studies. There may be opportunities for active enrollment and data collection for some studies. Take a few minutes to fill out a questionnaire and meet with these research coordinators – it will make a difference!

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 #RLDC2016LAMposium.

Silent Auction - Click here for more information on how you can participate.

Breath of Hope Raffle - Enter the Breath of Hope Raffle for a chance to win a Vacation for 2 to Palm Springs, a beautiful jewelry set, or $1,000 cash! Click here for more information.

TRAVEL TIPSplus

Executive Transportation Services will have a motor coach available on the hour, outside of the baggage area, at the Greater Cincinnati Northern Kentucky International Airport (CVG). This motor coach will transport you to and from the hotel at no cost during the following hours:

CVG to Marriott RiverCenter
Thursday, September 22 - 12:00 PM - 9:00 PM
Friday, September 23 - 7:00 AM - 4:00 PM

Returning to CVG
Sunday, September 25 - 8:00 AM - 5:00 PM

Look for the buses with RLDC•2016•LAMposium logos

For women on oxygen therapy, be sure to pre-order your oxygen through your standard oxygen supplier. Make certain they deliver your oxygen to the front desk of the Cincinnati Marriott at RiverCenter with your name on the order.

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.

We look forward to meeting you at the largest gathering of LAM and Rare Lung Disease patients and clinicians in the world, a unique environment where patients can interact with research and clinical specialists.