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From Sue Sherman, Executive Director

Spring is a time when new blossoms and new colors delight us at every turn. Life regenerates as gardens buzz with new energy. So too at The LAM Foundation, May is filled with inspiring events, new initiatives and a renewed commitment to our mission of finding a cure and assuring a better quality of life for everyone living with LAM.

We began early in May with our 3rd annual Million Dollar Bike Ride weekend in Philadelphia, bringing together cyclists, donors, rare disease organizations and scientists, all enthused about funding LAM and rare disease research. Our Board Chair, Andrea Slattery, hosted a very successful fundraiser and the Easy Breather Cycling Team rode in “April Showers” to secure at least $200,000 for LAM research. Totals are still being counted!

This led into a busy five days at the ATS meeting in San Francisco where The LAM Foundation welcomed its Scientific Advisory Board members and global LAM Clinic Directors to share lunch and new ideas for the treatment of LAM and clinical trials. In addition, more than 40 patients and family members met with Steve Ruoss, MD, Joel Moss, MD, PhD and Lisa Henske, MD for discussion and education. Shellie Owens, Mary Harbaugh, Julie Ng, Jan Harbacek, Susan Jardine and Susan Jacobs helped staff The LAM Foundation booth.

While these events may seem distant from the hardships of living with LAM each day, hold on to your hope and optimism knowing that this week we will celebrate the first anniversary of FDA approval of Rapamune to treat LAM and the 6th Annual Worldwide LAM Awareness Day.

Twenty years ago The LAM Foundation was like a newly sprouted tree under the watchful eye of Sue Byrnes and Frank McCormack, MD. While they could not envision the long term achievements of our patient and scientific community, WE now have reason to believe in the resolve of our talented global community to achieve our goals. They were together at ATS and in Philadelphia working on the next idea, clinical trial and funding endeavor. Thanks to everyone and enjoy the spring!

Registration for LAMposium opens Monday, June 6!

Join The LAM Foundation as we host our 19th Annual International Research Conference & LAMposium. This year, we are partnering with the Rare Lung Diseases Consortium for what will be the largest and most comprehensive scientific research meeting focused on rare lung diseases ever held. Patients and their families, along with researchers and clinicians with an interest in LAM and other rare lung diseases, are all welcome to attend this event to share, learn and collaborate.

RLDC•2016•LAMposium will take place September 22 – 25 at the Cincinnati Marriott at RiverCenter in Covington, KY, just across the river from Cincinnati, Ohio. Registration for LAMposium and the Breath of Hope Gala is FREE for women with LAM. You can also bring along your family and friends who want to help you with your LAM journey. There is so much to learn along with access to LAM experts from all over the country.

Here is a sample of just some of the topics we will cover at LAMposium:

  • LAM 101 – presented by Souheil El Chemaly, MD
  • Welcome to New Attendees – presented by Marla Hamlin
  • What Your Test Results Mean – presented by Robert Paine, III, MD
  • Risks and Benefits of a Drug Therapy – presented by Simon Johnson, MD
  • NIH Overview of Activities – presented by Joel Moss, MD, PhD
  • Top 10 Things to Know about Participating in LAM Research – presented by George Pappas, MD
  • Portable Oxygen Update and Trends for the Future – presented by Susan Jacobs, RN
  • Yoga Class – presented by Kat Steele

Other activities will include:

  • LAM and Rare Lung Diseases Research Room
  • Roundtable Discussions
  • Remembrance Room
  • Combined breakfast and lunch with researchers and clinicians
  • Scientific and Community Posters
  • Spouse and Partner Happy Hour
  • Friday Night Celebration Banquet
  • Breath of Hope Gala

Be sure to check The LAM Foundation’s website next week. Registration opens June 6.

We look forward to seeing you in Cincinnati in September!

June 1 is Worldwide LAM Awareness Day

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 in their countries.

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. Frances Saldivar-Morales and Lynnette Weese both used our letter to the editor template; read and share their stories by clicking here:
Frances Saldivar-Morales, "LAM Awareness Day is June 1"
Lynnette Weese,  "Woman with rare terminal LAM disease spends life helping others"
Click here to get started on your WWLAD activities!

Highlights from the Million Dollar Bike Ride

Congratulations to the LAM Easy Breathers cycling team and their co-captains, Patricia Ortiz and Ray Chen for riding to the finish line at the UPenn Orphan Disease Center’s Million Dollar Bike Ride!

Not only did our Easy Breathers brave the cold rainy weather to cross the finish-line, they also hit their goal of raising $50,000 for LAM Research. Because they hit their goal, UPenn Orphan Disease Center will match those funds, dollar for dollar. Now more LAM researchers will receive grants to further their research studies!

So much took place over the weekend in Philadelphia during the Million Dollar Bike Ride festivities and The LAM Foundation took full advantage of the opportunity to raise LAM awareness. Click here to learn about everything that took place and view pictures from the weekend’s events.

The LAM Foundation Attends the American Thoracic Society Conference

The American Thoracic Society (ATS) held its international conference May 13 - 18 in downtown San Francisco. Members of The LAM Foundation staff, along with expert LAM researchers and clinicians, were in town sharing LAM awareness and educating other lung professionals on the symptoms and signs and how to diagnose LAM.

The LAM Foundation leveraged this opportunity to meet with LAM Clinic Directors, members of the LAM Scientific Advisory Board (SAB), and women with LAM, family and friends who live in the area. Other highlights from the week include ATS honoring several LAM researchers and clinicians with awards. Click here to catch up on all the activities that took place.

LFN Travel Grant Applications are Now 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 30, 2016. To apply for the travel grant contact Anne McKenna, Patient Services Manager, at amckenna@thelamfoundation.org. She can provide you with an application or help if you have questions.

LAM Educational Meeting in Florida

Women from Florida gathered at the Mayo Clinic in Jacksonville for a day of learning and support. LAM Liaison, Jackie Carroll, hosted the day long event where LAM Clinic Director, Charlie Burger, MD gathered four other members of their LAM Clinic’s Mutidisplinary Team.

The clincians took the time to present on everything from managing LAM symptoms, updates on LAM research, lung transplant, looking at HR-CT scans, and respiratory therapy. The LAM Foundation’s Executive Director, Sue Sherman, also joined the meeting to invite everyone to LAMposium in September and give updates on all that is taking place at the Foundation. In all, about 20 people attended the meeting, some attending a LAM educational meeting for the first time.

LAM Educational Meetings in Seattle, WA and Portland, OR

There are two LAM Educational meetings taking place in the Northwest. Women with LAM, family and friends are all welcome to join us at these FREE educational events. Because these LAM Educational meetings are located close together,The LAM Foundation’s Executive Director, Sue Sherman, and Outreach Manager, Maria Pearson, will attend both meetings! Join us!

SEATTLE LAM EDUCATIONAL MEETING
On Saturday, June 11, The LAM Foundation is partnering with the TS Alliance to host the second of three combined LAM/TSC regional conferences. This daylong LAM/TSC Educational meeting will be held at the Swedish Medical Center’s Cherry Hill Campus. By collaborating, we can share how these two rare diseases are connected, share updates on research and find ways to improve quality of life for those living with LAM and TSC. Click here for the day’s agenda. This conference will cover updates on current LAM research, LAM Clinic Director, George Pappas, MD, will present on managing LAM symptoms and Morgan Blackmore will motivate us towards "Functional Strength".

Here are the details:

Date: Saturday, June 11, 2016
Registration begins at 8:00am
Conference runs from 9:00am - 4:00pm
Swedish Medical Center – Cherry Hill Campus
500 17th Ave.
Seattle, WA 98122
Parking is available in the parking garage under the Medical Center

To RSVP please give The LAM Foundation a call at 877.287.3526 or send an email to info@thelamfoundation.org

PORTLAND LAM EDUCATIONAL MEETING
If you live closer to Portland, OR, you may want to join us on the afternoon of Sunday, June 12 to meet LAM Clinic Director Matthew Drake, MD, from the Oregon Health and Science University. Sherrie Evenson, a Clinical Exercise Physiologist and 2014 LAMposium speaker, will also join us to present on "The Importance of Physical Activity in Daily Living".

Here are the details:

Date: Sunday, June 12, 2016
Meet & Greet 12:30pm - 1:00pm
Conference runs from 12:30pm - 4:00pm 
Oregon Health & Sciences University
Center for Health & Healing 3171 (Room 1A)
3303 SW Bond Avenue
Portland, OR 97239
Parking is available underneath the OHSU Center for Health & Healing
Click here for directions

Please RSVP to Sharlene Dunn at sharlene.dunn.home@gmail.com or sbrells@gmail.com or by phone at 253.307.9082

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. 

LINDA for LAM in Des Moines, IA

A LINDA for LAM event was held at a CrossFit gym in Des Moines, Iowa this past April, sharing LAM awareness and raising money for The LAM Foundation. The CrossFit Akeso hosted the event after learning their friend; Ashley Follett was diagnosed with LAM over two years ago.

Athletes participating in the LINDA for LAM event completed the ‘LINDA’ workout, consisting of 3 movements all working with a barbell. The rep scheme goes from 10 to 1 for each movement. Each athlete that participated deadlifted 1 ½ their body weight, bench pressed their body weight and cleaned ¾ of their body weight. Meddy Paulus owner of CrossFit Akeso said, “While this workout was difficult for our athletes, it is nothing compared to those who live with LAM every day.

Thank you to all of the athletes who participated in the event!

To view more photos, visit the CrossFit Akeso Facebook page and look under the LINDA for LAM event page. 

McCabe Crawfish Boil

It was a beautiful, sunny day with temps in the upper 80s Saturday on May 7th in Nashville, TN when the co-owners of McCabe Pub hosted the 4th annual McCabe Pub Crawfish Boil.  The event is in honor of LAM patient, Stefanie Dean Brown. 

Stefanie and her sister Katie Dean, co-owners of McCabe Pub, welcomed over 600 people to their annual Crawfish Boil. The attendees enjoyed live music, cool drinks, and spicy hot crawfish.

This event is not like most charity events in Nashville, as 100% of proceeds from this Crawfish Boil go to the The LAM Foundation. The sisters love inviting the community to their large back parking lot to enjoy good food, great friends, and bringing awareness and funds to LAM.

This year the fundraiser raised nearly $24,000 for LAM research and LAM education. Stefanie and Katie are already looking forward to and beginning to plan next year’s event.

Important DEADLINE June 15, 2016
2016 Fall LAM Research Funding Cycle

The LAM Foundation grant online application system closes for Letters of Intent (LOIs) on June 15, 2016.

Letters of Intent (LOIs) are recommended prior to submission of grant proposals to The LAM Foundation. 
•    June 15th - Deadline to submit your LOI by 11:59 PM CDT.
•    July 15th – Invitations will be extended to investigators with competitive projects.
•    September 15th - Deadline to submit your LAM grant proposal by 11:59 PM CDT.
•    December 30th - Applicants will be notified of award decisions by this date. Once the paperwork has been signed, funding will begin in January 2017.

LAM Foundation research awards include:
Career Development Awards;
Established Investigator Awards;
Pilot Project Awards
For more information about the grants, please see our website by clicking here  

For questions concerning any of the above contact: Judy Sheridan at 513.777.6889 or jsheridan@thelamfoundation.org.

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. 
 

Shop AmazonSmile for Father’s Day

Father's Day is Sunday, June 19. Shop for Dad at smile.amazon.com and Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to The LAM Foundation. Click here to start shopping!

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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