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From Sue Sherman, Executive Director

This month’s edition of Currents is again filled with extraordinary stories of achievement, action and resilience. The global LAM community is persistent in finding new ways to educate, engage and collaborate in our shared desire to rid the world of LAM.

In the midst of so much important work, I want to pass along a beautiful gift, given to me by Sarah Morgan of Portland, OR. On a beautiful summer evening earlier this month, she and her husband Mark made time to share a home cooked meal and then literally, ‘stopped time’ to encourage me to “smell the roses” at The International Rose Test Garden in Washington Park in Portland, Oregon. Thank you Sarah and Mark for sharing the gift of good food, friendship and time. Please enjoy reading this month’s edition of Currents and connecting to your global LAM family.

Register Today for the RLDC•2016•LAMposium

Registration is open!

Join us for the International Rare Lung Diseases Research Conference and LAMposium (RLDC•2016•LAMposium). RLDC•2016•LAMposium aims to foster the advancement of rare lung disease research by enhancing communication between patients, clinicians and scientists.

RLDC•2016•LAMposium Offers Three Educational Experiences:

International Rare Lung Diseases Research Conference: One full day (Friday) of 20 minute “Rare Lung Disease Intensive” presentations offering current state of the art diagnostics and treatments for 15 rare lung diseases. On Saturday, workshops on pulmonary alveolar proteinosis, pulmonary Langerhans cell histiocytosis and genetic lung disease will focus on planning clinical trials.

19th Annual LAM Research Conference: Leading LAM investigators join early career scientists to discuss recent scientific progress, with a focus on lung matrix.

19th Annual LAMposium Patients, Family & Friends Conference: LAM and Rare Lung Disease patients, family and friends will attend a wide variety of educational sessions designed to inform and inspire. Topics range from disease and treatment fundamentals, research trial participation and oxygen therapy to exercise, fundraising and advocacy.

Many additional activities are planned including the Research Room, Scientific Poster Reception, Rare Lung Diseases Clinic Director Congress, Friday Evening Celebration Banquet and Breath of Hope Gala.

Click here to register and to learn more:
https://www.thelamfoundation.org/conference

LAM Webinar Answers Pneumothoraces Questions

The LAM Foundation hosted an educational webinar this past month. Everyone was welcome to log on and participate in this interactive presentation giving by Daniel Raymond, MD, thoracic surgeon from the Cleveland Clinic. Dr. Raymond presented on “Management of Pneumothoraces and The Surgeon’s Role in the Treatment of LAM.” His presentation covered treatment of pneumothorax and chylothorax.

A highlight of the webinar; for about 30 minutes, the surgeon opened up the conversation to those attending to ask questions. Dr. Raymond took the time to answer everyone’s questions in detail. Thank you, Dr. Raymond, for dedicating your time to women in the LAM Community!

If you missed the webinar and would like to view it, click here.

By Sarah Poitras

Hello! My name is Sarah Poitras and I was diagnosed with LAM 6 years ago.

I am extremely excited to announce that my husband and I have set off to travel around the world. And we are working with The LAM Foundation to connect with members of the international LAM community to further the search for a cure. We will be visiting a lot of different places over the next 12 months including: Czech Republic, Poland, Germany, Scotland, The Netherlands, Japan, South Korea, Hong Kong, Vietnam, Laos, Thailand, Malaysia, Singapore, Australia, and New Zealand.

We would LOVE to meet any LAM patients along the way. If you live in one of these places and are interested in meeting up, please email me at sarahpoitras@gmail.com. We will also be blogging about our journey so if you're interested, please follow us at www.travelbreatherepeat.com or friend me on Facebook.

LAM Action Conference

The LAM Action annual conference was held on June 11 in Nottingham, England. Women with LAM, family and friends gathered with LAM researchers and clinicians from around the world to learn about scientific research taking place, hear about LAM Action’s fundraising activities and meet other women with LAM.

If you missed the live stream of the daylong meeting, you can catch up by clicking here. Within this six hour video, Professor Simon Johnson offers an introduction to LAM symptoms and what we know about the disease. Frank McCormack, MD was there to talk about progress in LAM research and what the U.S. and the UK can accomplish together. Women in attendance also discussed their journeys with LAM.

LAM Action is a UK registered charity. Members consist largely of women with LAM and their families and friends. LAM Action is managed by an Executive Committee, all of whom are volunteers and most of whom have LAM.

Breath of Hope Raffle Tickets are Available!

Looking for an easy way to raise money for The LAM Foundation? SELL or PURCHASE Breath of Hope Raffle Tickets! Order a stack of raffle tickets and sell them to your friends, family, co-workers or anyone who wants to take a chance to WIN a trip to Palm Springs, CA or win a luxurious necklace and earing set or straight cash!

Or purchase your own for a chance to win!  Ticket are $25 each or 5 for $100. To order your tickets, send an email to development@thelamfoundation.org today!

Grand Prize – Palm Springs Vacation for 2

Package for two includes six (6) nights at The Hilton Palm Springs Resort with two 60-minute massage sessions, gift certificates at local restaurants for lunch and dinner PLUS two Delta Airline tickets to Palm Springs. Valued over $4,000!

1st Prize – Hephaestus Jewelry

Custom crafted 18 karat gold, smoky quartz and citrine pendant and earring set from Hephaestus Jewelry. Valued at $1,795.

2nd Prize - $1,000 Cash

$1,000 of cold, hard cash to do with as you please! The options are limitless!

Drawing will be held at the Breath of Hope Gala on September 24, 2016. Need not be present to win!

LFN Travel Grant Applications Are Due Today!

Fill out and send in your LAM Family Network (LFN) Travel Grant Application today! June 30 is the deadline for us to accept applications. To apply, download this application, fill it out and email it back to Anne McKenna, Patient Services Manager at amckenna@thelamfoudation.org.

Women with LAM who would like to attend LAMposium but have limited finances can apply for a LAM Family Network (LFN) Travel Grant. The LFN Travel Grant only assists with travel expenses and partial hotel costs. Registration for LAMposium is free for women with LAM.

Thanks to the support from generous LAM Community donors, more women can receive financial assistance for their travels to Cincinnati, Ohio for the RLDC • 2016 • LAMposium and Breath of Hope Gala in September. 

If you have any questions about the LFN Travel Grant, contact Anne McKenna, Patient Services Manager, at amckenna@thelamfoundation.org

Add Your Personal Touch to this Year’s LAM Quilts

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. “One for the ladies who love the quilts with squares, and one for fun, created using the theme of the lungs from the conference logo as our template. You will have to come to LAMposium to see them both!” says Stacey. You can be a part of either (or both!) of these quilts. Click here to download the lung template and square instructions, and learn how to add your creative touch to each quilt. All squares and lungs must be sent to Stacey by August 1!

Women with LAM come together in Salt Lake City

A gathering for LAM support took place this past May in Salt Lake City, UT. LAM Liaison, Lynnette Weese hosted the gathering at Kristen Clegg’s home. Bailey Seay, Jill Bednarik and Nicole Van Nyhuis came together to hear about all the activities taking place at The LAM Foundation, updates on LAM research and scientific trials and to brainstorm on how they can all come together for a community fundraising event.

Lynnette is also planning to gather everyone for a Utah LAM family BBQ on Friday, August 5, 2016 at Nicole Van Nyhuis’ home in Taylorsville. Keep an eye out for more details on this gathering in the next couple of weeks.

Women from Three States Gather in the Mile-High City

Denver, Colorado was the perfect city to gather women from three states to re-connect on the eve of Worldwide LAM Awareness Day. LAM Liaison, Audrey Knipe, hosted the evening of support at The Abbey Tavern.

Ann Struthers from Colorado, Jennifer Hutchinson from South Dakota and Rhonda Officer from Wyoming joined Audrey for a casual dinner to connect and share their WWLAD plans.

Tapas and Togetherness in New Jersey

LAM Liaison, Patti Bébien-Aronoff hosted an afternoon gathering for LAM education and support in Hazlet, New Jersey this past month. Women with LAM, family and friends came together to share a tapas-style lunch, celebrate the life of Lynda Silvestri and the birth of Najah and Dontay Stevenson’s third daughter.

The group also had the opportunity to review the video, “Knowing How My Lungs Work Will Allow Me to Breathe Better”, presented by Barbara Rife, BS, RCP, at last year’s LAMposium. If you would like to review this presentation, click here

The LAM Foundation and TS Alliance Partner for a Day of Education in Seattle

The LAM Foundation and the Tuberous Sclerosis Alliance hosted a second educational conference together, this one taking place in Seattle, WA. Women with LAM, families and friends gathered at Swedish Medical Center to understand how LAM and TSC are connected, share updates on research and find ways to improve quality of life for those living with LAM and TSC.

The day long FREE conference was packed full of resourceful information for women with sporadic LAM and TS LAM. At the Seattle conference, LAM Clinic Director, Dr. Pappas, presented on “Living with LAM in 2016: What do we know and where to next?”. Dr. Raymond Yeung, from the University of Washington Medical Center, presented on “Research and Clinical Trials in LAM” and Personal Trainer, Morgan Blackmore, worked with us on functional strength. And of course, The LAM Foundation’s Executive Director, Sue Sherman, and CEO of the TS Alliance, Kari Rosbeck were there to welcome everyone and share all the exciting activities happening with each organization.

A third LAM/TS Alliance conference will take place at the Cleveland Clinic on Saturday, November 5, 2016 in Cleveland, Ohio. LAM Clinic Director, Robert Kotloff, MD, will present along with other members of his Core Multi-Disciplinary Care Team. Watch your email and social media for more details about the upcoming conference. If you have any questions, please contact us at info@thelamfoundation.org.

LAM Education Meeting in Portland

On Sunday, June 12, women with LAM, family and friends gathered at the Oregon Health and Science University where LAM Clinic Director, Matthew Drake, MD, presented on the latest news in LAM research. Pulmonary Rehab specialist, Sherrie Evenson, talked with us about the importance of closed lip breathing and how doing a little bit of exercise each day can promote a better quality of life. Sue Sherman gave an update on LAM Foundation activities. Many thanks to Sharlene Dunn, Sarah Morgan and her family for a spectacular job of making everyone feel welcome.

Learn More About LAM Events in Your Area

Want to see if there are any LAM events happening in your area?  Check out the Events Calendar on our website to find out more about our regional events. 

Day of Discovery Event

The Pontz family hosted a Day of Discovery event Saturday, June 11, 2016 in the Germantown neighborhood of Philadelphia. This fun event was family-friendly and focused on discovering new forms of art. There was plenty of food and activities for all in attendance, including art projects for the kids.

The highlight of the afternoon was bronze hand casting. Gina Michaels of the Gina Michaels Studio and her team helped guests make a mold of their hand. Guests then watched as the artists melted down the bronze to 2,000⁰F and poured it into the molds. It was fascinating to watch the process take place.

The Day of Discovery Event raised nearly $30,000 which will be donated to The LAM Foundation. The Pontz family crushed their original goal and with the addition of the LAMplify matching grant, was able to donate nearly $60,000 to The LAM Foundation.

2016 BLAM! Golf Outing Surpasses Every Goal

By Annette and Aaron Roberts

The 2016 BLAM! Golf Tournament and Banquet was hosted June 24 and 25 in Topeka, KS. The Friday night dinner kicked off with cocktails and conversation at a union hall event space, which was donated by IBEW 226. The 120 guests enjoyed a catered dinner before singing and dancing well into the night. A bid-bucket auction of donated items helped to raise funds for The LAM Foundation throughout the party.

After an amount of sleep that many people would consider a nap, golfers and volunteers headed to Cypress Ridge Golf Course for a 7:30 am check-in and 8:30 am tee-off on Saturday morning.  Twenty-two 4-man teams competed throughout the morning, with the winning team scoring a 17-under 54. Funds were raised during the round with the sale of mulligans, an “in for $10” par 3 contest and a courtesy 340 yard drive on a par 5.  Contests included long drives, a race hole and goofy team photos. Drinks were flowing with three beverage carts on the course, driven by enthusiastic volunteers, including LAM patient Annette Roberts.  “I love meeting all of the golfers while I’m driving the cart.  People have mentioned that my struggle inspired them, but I think the real inspiration is seeing what can be accomplished when friends, family and complete strangers all get together to meet a common goal.”

The fund-raiser was the fourth annual event hosted by Annette and her family. She was diagnosed shortly after giving birth to her daughter Amelia in 2012 and the idea for the event was born several months later.  Her husband Aaron Roberts discussed how it came about. “We realized early on that The LAM Foundation would be one of our strongest allies in her fight against the disease. We spent some time thinking about how we could contribute to that fight, rather than just being a recipient of services.” He said that the family’s strong golf background made the tournament a natural fit. The banquet was added as a way to include the families of the golfers and any other interested non-golfers.

The family plans each outing with three goals in mind: raise funds for The LAM Foundation, raise awareness for LAM and celebrate life and success in the battle against LAM with friends and family. The fund-raising goal has resulted in over $32,000 donated to The LAM Foundation after expenses, with this year’s contribution yet to be added. Around 200 people participate each year and many tell of spreading the word about LAM as they describe the event to others.  As for the celebration of life, the pictures can do the talking. 

The 1st Tee it Up for LAM! is a Huge Success!

By Marie Glasby and Kathy Peiffer

The inaugural Tee It Up for LAM! golf outing was held on June 24 at the Whisper Creek Golf Club in Huntley, Illinois. Duane and Kathy Peiffer along with Dan and Marie Glasby organized the event. The day began with golfer check-in with lunch, then a shotgun start. Once the golfers had completed 18 holes of golf, they were treated to a delicious buffet dinner and expansive silent auction in the ballroom of Jameson’s Steakhouse. 64 golfers and 37 people attended the dinner, along with Loyola LAM Clinic Director, Dr. Dan Dilling, who participated in the golf outing and gave the keynote address.

This event was made possible thanks to the support of the Woodstock and Elgin communities, family and friends. We were happy to see that several Lammies and their families and friends from the Chicago area along with some from far away as California who were able to attend. The local community was generous with their silent auction items that included several sets of Chicago Cubs ticket and Chicago White Sox tickets, Walt Disney World Day passes and Snap-On Tools.

The Peiffers and Glasbys are grateful for the support in making the first Tee It Up for LAM! golf outing a success! The golf outing raised approximately $11,000 and with the addition of the LAMplify! Challenge Grant, hope to see a final donation of approximately $20,000!

Worldwide LAM Awareness Day Highlights

Thank you to everyone who helped make the 6th annual Worldwide LAM Awareness Day a huge success! With your help we reached over 12,000 people on Facebook and raised over $12,000 through our WWLAD Fundraising pages. 

Current Trials and Studies

Interested in participating in research?  Check out our Current Trials and Studies page on our website to learn more about how you can participate. 
Copyright © 2016 The LAM Foundation, All rights reserved.
March 2016 Currents
Our mailing address is:
4520 Cooper Road, Suite 300 Cincinnati, Ohio 45242
513.777.6889 
www.thelamfoundation.org

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