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From Sue Sherman, Executive Director

“I don't want a never-ending life; I just want to be alive while I'm here…”

This catchy refrain is from a song that has been stuck in my head since hearing it last Sunday while driving home from a Million Dollar Bike Ride training ride. The sentiment reinforced my mental musings while on a gorgeous 70-mile ride through southern Kentucky in springtime.

Living life to its fullest, loving those dear to us, feeling alive and healthy – these are things we all want for ourselves and for others. And they are the joys that our membership in the LAM community teaches us to never take for granted.

Jump in to this edition of Currents and learn what it means to “be alive” in the LAM Family: Awards from West Point Academy, Worldwide LAM Awareness Day, the largest Million Dollar Bike Ride Team, an Innovation Grant to distribute LAM Guidelines, 80+ person Regional Educational events, ‘LAMplified’ fundraisers and a new website…
 
We are indeed ALIVE and pursuing a LONG lifetime for every woman with LAM. Thank you for all you do in support of The LAM Foundation. 

The LAM Foundation’s New Website


The LAM Foundation is proud to share our newly designed website! The new site offers a wealth of information about LAM, along with ways to connect with each other along with how communities are sharing LAM awareness and fundraising. It has taken us months to modernize the content for the site and we will continue to keep it up-to-date with the most valuable information. The LAM Foundation website will be a place where everyone from around the world can come to learn about diagnosing and treating LAM. Check it out by clicking here!

A Million Things To Do at the
Million Dollar Bike Ride

We are just a week away from the starting line at the Million Dollar Bike Ride. The LAM Easy Breathers Cycling Team is 42 riders strong and working hard to raise money for LAM research. If you live near Philadelphia or are in town, check out some of the activities you may want to attend.  And of course you do not need to be in Philadelphia to take part in all of the festivities surrounding the event!  Click here to find out how you can participate in a weekend of activities.

Laura Bowers Receives
Award to Educate Doctors

The Eshelman Institute for Innovation has awarded Laura Bowers, a ‪LAM‬ patient and third-year student at the UNC Eshelman School of Pharmacy, funding to educate doctors on best practices for treating and diagnosing LAM.

Laura will roll out “The Air You Breathe Campaign”, based on the new guidelines being published later this year to ER physicians and obstetricians/gynecologists. She is targeting these specialists because they generally are the first to treat women experiencing the symptoms of LAM, prior to being diagnosed. Congratulations, Laura!

Teresa Stoker Receives 
West Point Society Award 

Teresa Stoker, member of The LAM Foundation’s Board of Directors and LAM patient, recently received the West Point Society of Atlanta’s Distinguished Citizen Award.  The award is given to an individual in the state of Georgia (other than a West Point graduate) whose outstanding character, accomplishments and stature in the civilian community draw a wholesome comparison to the qualities for which West Point strives, in keeping with its motto “Duty, Honor, Country”. 

The award is made from a carved piece of stone and weighs about 25 pounds.  “I was so honored to receive the West Point Society of Atlanta’s Distinguished Citizen Award,” said Teresa Stoker. “My late father, who served in the Army for five years during WWII and survived Pearl Harbor and Iwo Jima, would have been so proud.” 

Please join us in congratulating Teresa on her outstanding achievement!

Join us at the ATS Conference in
San Francisco

The American Thoracic Society (ATS) is hosting their annual conference in San Francisco May 13 – 18. Pulmonary, critical care, and sleep professionals who are members of the ATS will gather for educational seminars, workshops and exhibitions. The LAM Foundation will also be there and would like you to join us as we promote LAM awareness by educating lung professionals about the symptoms and signs of LAM, diagnostics, treatment and research advances.

There are three ways to get involved. If you live near San Francisco, click here to find out how you can be a part of the conference.

Go Global with LAM Awareness

On Wednesday, June 1, women with LAM, family, friends, researchers and clinicians from around the world will share LAM awareness on Worldwide LAM Awareness Day (WWLAD). This year, sharing LAM awareness is especially important as countries all over the world are looking to the U.S. FDA approval of Rapamune to treat LAM as a bellwether to push for approval at home.

It was just one year ago -  May 29, 2015,  when the FDA approved Rapamune as the first treatment for patients with LAM, based on the work of the scientific and clinical investigation team, patients, industry and government agencies and The LAM Foundation.

The LAM Foundation is urging you to take part in Worldwide LAM Awareness Day. We have created tools to help you share your story and increase global awareness. We have made this easy for you by providing everything you'll need on our website.  


Please consider joining us! Click here to learn how you can take part in WWLAD.

We are counting down the weeks until the International Rare Lung Diseases Conference and LAMposium, scheduled for September 22 – 25 in Covington, KY. The team here at the Foundation is busy lining up presenters for both the scientific and patient and family tracks.  

Kat Steele has offered to join us at LAMposium as our resident Yoga instructor!  Kat is currently enrolled in a 200- hour teacher training program to become a certified yoga instructor. We are thrilled to have her share the healthy benefits she receives from practicing yoga. We hope you will join us!

Plan to arrive in Cincinnati the afternoon on Thursday, September 22. That evening we will host our Welcome Reception with Keynote speaker, Co-Founder & Executive Director of the Castleman Disease Collaborative Network, David Fajgenbaum, MD, from University of Pennsylvania.

Dr. Fajgenbaum will present on his personal journey with Castelman Disease, a rare disease that is described as a group of inflammatory disorders that vary from a single enlarged lymph node to life-threatening multiple organ failure.

There is a lot that happens at LAMposium. Click here and read "The Twenty Best Things about LAMposium"  by Pat Rubadeau who is looking forward to  RLDC•2016• LAMposium.

Online Registration for RLDC•2016• LAMposium
will begin in June.

SAVE THE DATE
September 22 – 25, 2016
Cincinnati Marriott at RiverCenter
10 West Rivercenter Blvd.
Covington, KY 41011

LFN Travel Grant
Applications are Available

The LAM Family Network (LFN) Travel Grant helps fund travel for women with LAM to LAMposium every year. 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 are a woman with LAM and want to attend LAMposium, but have limited finances, you 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.

Applications must be received by June 6, 2016. To apply for the travel grant click here. Contact Anne McKenna, Patient Services Manager, at amckenna@thelamfoundation.org. with any questions you may have.

Regional Events Keep us
STRONGER TOGETHER

Education on the Latest LAM Research at Loyola

LAM Liaisons Kathy Peiffer and Marie Glasby hosted a LAM educational meeting at Loyola Medical Center in April. Women with LAM, family and friends were treated to lunch and presentations by Caroline LePoole, PhD and Loyola Medical Center LAM Clinic Director, Dan Dilling, MD.

Dr. LePoole presented on her study of immunotherapy with T-cells being used in a Loyola clinical trial for melanoma. She discussed the relationship between melanoma, vitiligo and LAM, and expressed her hope that these studies can be applied to a LAM trial.  Dr. Dilling shared current and upcoming LAM trials that will soon be available through the Loyola LAM Clinic. 

Dr. LePoole gave everyone a tour of her lab, highlighting all of the various tools used in research. Two of her lab assistants were on hand to talk about their work with LAM research and showed LAM cells under a microscope. Many thanks go out to Dr. Dilling and Dr. LePoole for taking time out of their schedule to share the exciting things happening at Loyola!

LAM Support Luncheon in Phoenix

Women with LAM and a guest were treated to lunch at BJ’s Brewhouse in Peoria, AZ, a suburb of Phoenix. LAM Liaison Charm Perry Flint hosted the free luncheon as a way to welcome and introduce LAM Lead Belinda Romney to the women in that region. BJ’s was very gracious in picking up the tab for everyone’s lunch and allowed everyone the opportunity to get to know one another.

The support luncheon generated conversations around LAMposium taking place in September, a new LAM clinician in Phoenix, and experiences from the NIH. Thank you BJ’’s Brewhouse for your hospitality!

The LAM Foundation & The TS Alliance – STRONGER TOGETHER

The first of the LAM & TSC Conference series was held in Nashville, TN on Saturday, April 16. The LAM Foundation and the TS Alliance worked together to provide educational outreach, information on the latest treatment, research updates and support for both LAM and TSC patients.

Special thanks go out to Dr. Lisa Young and Dr. Kevin Ess who both worked diligently to find engaging speakers to present to an attentive audience. One highlight was a joint presentation by Kari Luther Rosbeck, President & CEO of the TS Alliance and Sue Sherman, Executive Director of The LAM Foundation. They both spoke about what was happening within their organizations and where they are headed into the future.

The next installment of the TSC & LAM Conference series will take place Saturday, June 11 in Seattle, Washington at the Swedish Medical Center. For more information about the conference series and how you can register, click here.

Events Calendar

Check out the Events Calendar on our website to see what is coming up in your region.

LAMplify Boosts Donations at
Community Fundraisers

The LAMplify program is receiving rave reviews from community fundraisers who are exceeding their goals.

  • In just one month, Joanne Unger is more than halfway to her goal of raising $10,000 to celebrate her 10-year Post Lung Transplant Anniversary through her Friends Asking Friends website.
  • The Newland Communities, who hosted the SLAM LAM Charity Walk on April 9 in Houston, Texas, donated over $40,000 on behalf of Newland employee, Kathi Hawn.
  • Morphotek’s 3rd Annual Golf Outing on April 11, outside of Philadelphia, raised $14,000.

We look forward to hearing from the following community fundraisers in coming months as they double the impact of their events!

  • Andrea Slattery, Board Chair of The LAM Foundation, will host the 2nd annual Merion Cricket Club Event at the beginning of May. 
  • The Pontz family is hosting a “Day of Discovery” on June 6 in Philadelphia to raise $10,000.
  • Tee It Up for LAM! Golf Outing on June 24, outside of Chicago, hosted by The Woodstock and The Elgin Friends of The LAM Foundation, is on its way to raising $10,000 for the Foundation.

If you would like to learn more about how you can LAMplify your community event and stretch your goal contact Katie Jensen at the Foundation at kjensen@thelamfoundation.org. When you accept the LAMplify Challenge Grant and stretch your goal, The LAM Foundation will match proceeds from your event dollar for dollar!

Current Trials and Studies
Click here to learn about current LAM research trials and studies. Call the research coordinator with any questions you may have. 

Your Mother will Smile when you
shop AmazonSmile

Mother's Day is Sunday, May 8. Shop for your mother at smile.amazon.com and Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to LAM Foundation.  Click here to start shopping!

Copyright © 2016 The LAM Foundation, All rights reserved.
April 2016 Currents
Our mailing address is:
4520 Cooper Road, Suite 300 Cincinnati, Ohio 45242
513.777.6889 
www.thelamfoundation.org

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