From Sue Sherman, Executive Director

IT’S HERE!! After 18 long months, LAMposium has finally arrived. It’s like waiting an extra six months for your birthday! It is time to celebrate progress and friendship, while also gathering resources and inspiration for the important road ahead.

The LAM community has a 19-year history of hosting the NHLBI-sponsored LAM Research Conference and LAMposium. This year, the RLDC•2016 conference offers an important expansion of the conference, growing into the largest gathering of rare lung disease specialists from around the world, including LAM scientists and clinicians, as well as patients and families. The programs will offer information on the latest and most significant developments in clinical practice, clinical and basic research, patient advocacy and education in more than 120 scientific, medical and patient education presentations. On Sunday, LAM Clinic Directors will convene for the first-ever LAM/Rare Lung Diseases Clinic Director Congress, where they will discuss clinic experiences and cases, the importance of assembling care teams and the progress toward diagnostic and treatment guidelines.

For patients and families with LAM and other rare lung diseases, this weekend is filled with unique opportunities to learn, participate and engage with global leaders in the field and each other. This issue of Currents is dedicated to the many activities planned September 22 – 25 in Cincinnati. I also encourage you to download and use the RLDC•2016 Mobile App, offering detailed information about each session and activity.

See you soon and safe travels!

RLDC•2016•LAMposium Highlights

We are less than a month away from the largest Rare Lung Diseases Research Conference to ever take place in the United States. And it is all happening September 22 – 25 at the Northern Kentucky Convention Center, directly across the river from Cincinnati, Ohio. The LAM Foundation is partnering with the Rare Lung Diseases Consortium to host the RLDC•2016•LAMposium. Researchers and clinicians who are studying or treating over 17 rare lung diseases will gather with us to share the latest research updates and discuss how to properly diagnose and treat these rare lung diseases.

The LAM Foundation is thrilled to welcome other Rare Lung Diseases Patient Advocacy Groups (PAGs) to LAMposium, our unique scientific conference that includes patients and families as an integral component.

This year we are expecting more researchers and clinicians, more women with LAM, and more family members and friends than ever before. Click here to review some of the conference highlights that are planned for the weekend.

RLDC•2016•LAMposium: Let’s Do the Numbers

The LAM Foundation is expecting a record number of attendees at the 2016 International Rare Lung Diseases Research Conference and LAMposium (RLDC•2016•LAMposium). Currently, over 121 women with LAM, along with over 65 family and friends are already registered for RLDC•2016•LAMposium. Those numbers are growing! Register today so we can plan for your arrival!

Hotel rooms at the Cincinnati Marriott at RiverCenter are close to being sold out on Thursday, Friday and Saturday nights! Click here to make your reservations. 

Alternate hotel accommodations, which are within a block away from the Northern Kentucky Convention Center, may be made at the Embassy Suites by Hilton Cincinnati RiverCenter.

Embassy Suites by Hilton RiverCenter
10 East Rivercenter Boulevard
Covington, Kentucky 41011
 859.261.8400
1.800.Embassy

Let’s break down the numbers:

• 194 Researchers and clinicians from over 21 countries are attending.
• 52 LAM Clinic representatives from around the world will be in attendance.
• 17 Rare Lung Disease Intensive Sessions are taking place at the RLDC.
• 60 Scientific Posters representing LAM and other Rare Lung Diseases will be on display.
• 21 LAMposium presentations covering LAM research updates and insights into improving the quality of life for women with LAM.
• 2 Full days of connections with LAM researchers, clinicians, women with LAM, their family and friends will take place.

Make sure you, your family and friends register before Thursday, September 15, 2016. We look forward to seeing you soon!

RLDC•2016•LAMPOSIUM IS GOING MOBILE

RLDC•2016•LAMPOSIUM is going mobile! Everyone attending the RLDC•2016•LAMPOSIUM will have access to Wi-Fi and our mobile app. By using the mobile app, you can connect with other attendees, access the agendas, create your schedule, fill out evaluations and take notes through the RLDC•2016•LAMposium Mobile App.

There are three ways to access the Mobile App:

• Pull up this link on your phone - https://guidebook.com/g/rldc-2016
• Visit this link on your computer - http://guidebook.com/guide/57468
• Scan our QR Code - on the right

Our Mobile App is available and “interactive” for the iPhone and Android phones.  The App is also available for iPads and Kindles, but you will not be able to interact on those devices.  
To download the Mobile App, type this URL into your search engine (https://guidebook.com/g/rldc-2016) or locate the Guidebook app in the App Store or Google Play. Once you have installed the Guidebook App, press the “Enter passphrase” at the top and enter “rldc2016” or use the QR scan feature.

You can personalize your profile on the app, connect with others and customize your schedule so you don’t miss an event.

Everyone will have access to FREE Wi-Fi at the Northern Kentucky Convention Center (NKYCC). There will also be charging stations available throughout the NKYCC conference center for you to charge your smartphones. (Please remember to bring along your charger!)

Travel Tips for LAMposium

We hope your stay in Cincinnati for the RLDC•2016•LAMposium will be enjoyable. The LAM Foundation staff has worked hard to make certain of that! Check out our travel tips as you prepare for your adventure to the city we call home.

Make Your Hotel Reservations Now

Hotel rooms at the Cincinnati Marriott at RiverCenter are close to being sold out on Thursday, Friday and Saturday nights! Click here to make your reservations.

Alternate hotel accommodations, which are within a block away from the Northern Kentucky Convention Center, can be found at the Embassy Suites by Hilton Cincinnati RiverCenter.

Embassy Suites by Hilton RiverCenter
10 East Rivercenter Boulevard
Covington, Kentucky 41011
 859.261.8400
1.800.Embassy

Flying Into Northern Kentucky

The closest airport to the Cincinnati Marriott at RiverCenter and the Northern Kentucky Convention Center is the Greater Cincinnati Northern Kentucky International Airport or CVG. Yes, the airport and conference are in Northern Kentucky, just across the river from Cincinnati, Ohio.

Free Shuttle To and From the Airport

When you arrive at the airport, a FREE motor coach will be available to take you to and from the Cincinnati Marriott at RiverCenter. You can connect with the motor coach at the top of every hour outside of baggage claim at the airport.

Hours for the shuttle services are:

• Thursday, September 22 - 12:00pm – 9:00pm
• Friday, September 23 - 7:00am – 4:00pm
• Sunday, September 25 - 8:00am – 5:00pm

Access to the motor coach will be in the valet area of the Cincinnati Marriott at RiverCenter. Be sure to look for the shuttle with the RLDC logo (the one with the lungs) in the window.

Weather Conditions in Cincinnati

The weather in Cincinnati in September is wonderful. It’s typically sunny and warm with temperatures between 75 and 85 degrees. The RLDC•2016•LAMposium will take place in a conference center, which can get chilly. Dress in comfortable clothes and bring along a sweater or jacket.

Oxygen Needs

If you need supplemental oxygen, be sure to request your oxygen to be delivered to the hotel on the day you arrive.

The address for the hotel is:

Cincinnati Marriott at RiverCenter
10 Rivercenter Blvd.
Covington, KY 41011

Bluegrass Oxygen will supply back up E Tanks for those who need additional oxygen while at the conference. Please remember to bring your oxygen prescription with you; this will not be a full-time manned oxygen refill station. If you anticipate additional needs, please contact us at info@thelamfoundation.org as soon as possible so we can make accommodations for you.

Bring Your Yoga Mat

If you can, bring along your yoga mat. Kat Steele will lead us in three yoga sessions this weekend. Each session will begin at 7:00am in the Kentucky Room at the Cincinnati Marriott at RiverCenter. If you cannot travel with your yoga mat, borrow a towel from the hotel. Space is limited, so if you want to participate, arrive early and grab your spot on the floor.

Sunday Morning

Plan to stick around on Sunday morning after breakfast. RLDC Co-chairs, William Parks, PhD and Robert Kotloff, MD will summarize the Friday and Saturday sessions with the researchers and clinicians. This is a wonderful time to learn about the exciting new research discussed within these two days and how research is advancing toward a cure for LAM.

Two LAM Quilts at LAMposium This Year!

LAM Liaison Stacey Wheelus is sewing together the LAM Quilts for LAMposium again this year. Thank you to everyone who took the time to donate fabric squares and lungs to help create these one-of-a-kind quilts!

Stacey is excited to share with you the completed quilts. She was able to collect enough fabric squares to complete a table runner and she is using the fabric lungs to design a wonderful quilt throw to keep someone warm this winter. No sneak peeks at Stacey’s creations - this photo is from last year's quilt. She told us we will have to wait until we see her and the quilts at LAMposium!

Join Us at the Breath of Hope Gala!

Don’t miss The LAM Foundation’s biggest celebration of the year! The Breath of Hope Gala will feature a silent auction (including Beats headphones, an India Hicks clutch and a Tony Dorsett signed Hall of Fame mini-helmet), a chance to win an all-expenses paid getaway to Palm Springs in the raffle, dinner, drinks, dancing and games (Giant Jenga, anyone?). Click here to register now!

The highlight of the Breath of Hope Gala is the Fund A Cure auction – 30 minutes of pure generosity where attendees can raise their paddles to donate directly to LAM research. You can raise your paddle early by making a pledge or payment to Fund A Cure now. Email development@thelamfoundation.org to find out how!

Sponsor a table for 10 on behalf of your company, family, or region! Click here to sponsor a table today.

Can’t make it to Cincinnati? You can still participate in the gala by buying or selling raffle tickets, donating to the silent auction or raising your “virtual” paddle for Fund A Cure! Email development@thelamfoundation.org for more details.

LAM Education in Hot Springs, Arkansas

LAM Liaison Beverly Jackson welcomed women with LAM in her region to her home for a LAM Education luncheon this past month. The gathering was time of renewing friendships and catching up on everyone's lives. Peggy Getman shared her six year journey to receiving a lung transplant. She is now able to walk up Beverly’s steep driveway without oxygen! They also welcomed Dr. Thomas Lowder to Arkansas. This past month he moved from Houston, TX to Arkansas. Dr. Lowder also talked about his exercise study.

Backyard BBQ in Salt Lake City

Nicole Van Nyhuis and her husband welcomed women with LAM, family and friends to their home for a Backyard BBQ in Salt Lake City, UT. LAM Liaison Lynnette Weese gathered everyone, including LAM Clinic Director Robert Paine III, MD from the University of Utah School of Medicine.

"Everyone had a wonderful time getting to know one another in a relaxing setting”, said Lynnette Weese. “We look forward to seeing more women with LAM along with their family and friends at our next gathering.”

UC San Diego Hosts First LAM Education Event

Women who live near San Diego had the opportunity to attend a LAM Education meeting and luncheon at the University of California San Diego (UCSD) on Saturday, August 20, 2016. LAM Liaisons Charm Perry Flint and Patricia Ortiz helped plan an amazing day. The University did a wonderful job of introducing the LAM Clinic team at UCSD, including a discussion by Dr. Christine Bowjanowski, who shared her thoughts on what to expect at their LAM Clinic. Dr. Irina Gutman presented on drug therapies for LAM along with side effects and Dr. Ni-Cheng shared a presentation on Mindfulness Based Stress Reduction. Finally, LAM Clinic Director Dr. Kamyar Afshar offered insights into Current Treatments and Clinical Trials.The LAM Foundation’s Executive Director, Sue Sherman, invited everyone to LAMposium and shared all of the exciting plans taking shape at the Foundation.

Special thanks to Patricia Ortiz who put a lot of time into planning this meeting but was not able to attend.

If you could not attend this meeting, Dr. Afshar is already working to host another LAM Education meeting at UCSD in January.

LAM Education in the Rocky Mountains

Women with LAM, family and friends who live near Evergreen, Colorado were invited to the home of Pam and Richard Bard the Greystone Manor and Estates. With the help of Pam Bard, LAM Liaison Audrey Knipe gathered speakers and instructors for a daylong gathering.

The day started poolside with a yoga session and a luncheon where everyone could socialize and reconnect. The afternoon was dedicated to learning about the latest in LAM Research with Clinic Director Gregory Downey, MD from National Jewish Health and Integrative Health Expert, Len Wisneski, MD,discussed foods and supplements that are beneficial for respiratory health.

The LAM Foundation’s Executive Director, Sue Sherman, was also in town to invite everyone to LAMposium and for a Tai Chi/Chi Gong lesson which ended the day.

Learn More About LAM Events in Your Area

Current Trials and Studies