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March 2016 Issue of CURRENTS
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A Note From Sue Sherman, Executive Director

Welcome to Currents, March 2016, recounting a month of extrordinary recognition for the power of the LAM Community. At the NIH celebration of Rare Disease Day on February 29, Francis Collins, Director of the NIH shared the LAM story. (See video below.) That was followed by more citations on the NCATS website and from Chris Austin, MD, Director of NCATS.

Today, and through this weekend, The LAM Foundation Board of Directors is meeting at Brigham and Women’s Hospital in Boston for its semi-annnual meeting and educational meeting with 75 women with LAM and their families. These events, and more details in this newsletter, demonstrate our continued resilience and progress toward better treatments and a cure.

Read on and be inspired. Join the LAM community and be part of something extraordinary!

NIH Director, Francis Collins, MD, PhD
Opening remarks on Rare Disease Day at the NIH 

RLDC•2016•Cincinnati Call for Abstracts

The LAM Foundation and the Rare Lung Disease Consortium hopes you will join us for the 2016 International Rare Lung Diseases Research Conference!  The conference will be hosted concurrently with the 19th Annual NHLBI - LAM Foundation International Research Conference and LAMposium in Cincinnati, Ohio, on September 22-25, 2016.

You are invited to submit your abstract with results of your work. The objective of the meeting is to provide a state-of-the-art review of the clinical and basic research progress in LAM and Rare Lung Diseases such as BHD, DIPNECH, PLCH, Lymphangiomatosis, Cattleman’s, IgG4 related lung disease and others. Studies on basic science, translational and clinical aspects of rare lung diseases, including lymphangioleiomyomatosis are welcome.

PROCESS OPENS: The LAM Foundation's website will serve as the repository for all rare lung disease abstracts. The website opened on March 15, 2016.

Click here for the TLF Grant/Abstract Website.

SUBMISSION: The deadline for ABSTRACTS is midnight EDT on June 27, 2016.

NOTIFICATION: Monday, July 25, 2016 – to give enough time to register for the meeting and make airline reservations 3 weeks in advance.

Please contact Judy Sheridan - jsheridan@thelamfoundation.org if you have any questions or problems accessing the grant website.

Rapamune is approved in Russia and South Korea

Our friends at ‪Pfizer‬ have informed us that ‪Rapamune‬ is now an approved treatment for ‪LAM‬ in both Russia and South Korea.‬‬‬‬‬‬‬‬‬ Now more women with LAM have access to a treatment that could slow down the progression of LAM. Thank you to Pfizer for working with international governments to help more women receive access to Rapamune!

Rare Lung Disease Week at ATS

During the first full week of March, Lymphangioleiomyomatosis was the highlight for Lung Disease Week at the American Thoracic Society (ATS). During the week, the ATS website educated its members, patients and families about rare lung diseases, specifically LAM. Viewers had access to information on the symptoms, diagnosis, and treatment of LAM along with access to in-depth information hosted on The LAM Foundation’s website.

One of the highlights of the week was the webcast on “Chest Pain: Insight into the Reasons Why Women with LAM Have Pain”, presented by LAM Clinic Director, Stephen Ruoss, MD, from Stanford University School of Medicine. The ATS hopes to foster interaction between patients, clinicians and researchers by hosting online question-and-answer sessions and webinars featuring lung disease experts. You can review the presentation by clicking here.

ATS Meeting in San Francisco

 
The American Thoracic Society (ATS) is hosting its annual conference in San Francisco, CA from May 13 – 18.  If you live near San Francisco, you are invited to meet LAM Clinic Director, Stephen Ruoss, MD at the “Meet-the-Experts” Public Advisory Roundtable 10th annual patient/family forum on Saturday, May 14.  This year’s “Meet–the-Expert” will take place from 10:00am – 2:00pm at the San Francisco Marriott Hotel on Mission Street. This year’s talks will focus on empowering patients with technology. If you would like to make a reservation for this event, please send an email to cwhite@thoracic.org no later than Monday, May 2, 2016.

Later in the afternoon, Dr. Ruoss will join Joel Moss, MD, PhD, from the NIH, as The LAM Foundation hosts an afternoon gathering for women with LAM, family and friends. Drs. Ruoss and Moss will share updates on the latest LAM research as well as clinical advances in diagnosing and treating LAM. Join us at 3:00pm at Jillian’s at Metreon, 175 Fourth Street, San Francisco CA 94103. If you have questions about any of these ATS events, contact the Foundation at info@thelamfoundation.org or call us at 888.287.3526.

New Address for The LAM Foundation

The LAM Foundation has moved. We began a new chapter of discovery and progress toward a cure in our new home. We would enjoy it if you could stop by to see our new space. In the meantime, here are some photos of the new office. 

SIX MONTHS UNTIL LAMPOSIUM IN CINCINNATI!

LAMposium is September 22 – 25 at the Marriott RiverCenter in Covington, KY – just across the river from Cincinnati. The registration site will be up and running the first week in June. The Foundation will send emails along with a printed flyer with details on how to register along with all that is taking place at the International Rare Lung Diseases Conference, LAMposium and Breath of Hope Gala.

All of our LAM Clinic Directors are encouraged to join us this year, along with LAM and our Rare Lung Disease Consortium researchers and clinicians. The goal of this conference is to inspire scientists and clinicians as they connect with patients and each other to find better treatments, diagnosis and ultimately a cure for all rare lung diseases.

Even though we are in another city this year, a lot of the familiar events that took place in Chicago will also happen in Cincinnati.
  • You can connect with researchers and clinicians at our combined breakfast and luncheons.
  • LAM researchers will be available to answer your questions and help you sign up for LAM research and clinical trials.
  • LAM community fundraisers and researchers will bring along posters for you to review.
  • Stacey Wheelus is working diligently on the newest LAM quilt.
  • The Oxygen Station will be available on Friday and Saturday.
  • We will have transportation available to take you to and from the Greater Cincinnati Northern Kentucky International Airport
If you could not make it last year, see what you missed by viewing the below video.

Feel free to share this video with your family and friends.  We look forward to seeing you at RLDC•2016•LAMposium!
LAMposium 2015

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 contact Maria Pearson, Outreach and Events Manager, at mpearson@thelamfoundation.org. She can provide you with an application or help if you have questions.

‘Virtual March on the Hill’ Advocacy in Numbers

The first week of March ushered in the Foundation’s first ‘Virtual March on the Hill’ when nearly 20 women with LAM, family and friends took the time to call, email and visit their local U.S. Representatives and Senators offices. 

Our ‘Virtual March on the Hill’ was coordinated in partnership with the Tuberous Sclerosis Alliance’s annual ‘March on the Hill’ when advocates from the TS Alliance visited 326 members of the House of Representatives and 82 Senators, in Washington D.C. on March 2.  Together, it was time well spent urging our Congressmen and women to continue funding the Tuberous Sclerosis Complex Research Program (TSCRP) which also includes critical funding for LAM Research. 
LAM Foundation Executive Director, Sue Sherman and Patient Services Manager, Anne McKenna did their part by visiting the local offices of Sherrod Brown, senior United States Senator from Ohio. They had the opportunity to share LAM Awareness and advocated to sustain critical LAM research funding. 

If you would like to learn how to advocate continuing government funding for LAM Research, give Anne McKenna a call. She will connect you with the tools you need to get started.

LAM Awareness Events

The LAM Foundation is just in awe of the dedicated women with LAM who share LAM awareness to anyone who will listen. Sharing your journey with those who have never heard of lymphangioleiomyomatosis can enlighten medical students, reengage clinicians and therapists and educate women to the symptoms that are sometimes disguised as other ailments.
Within three short months of 2016, four women in the LAM Community took the time to share LAM awareness with some small and sometimes large conferences across the country. This is just a small sample of the all of the LAM awareness that takes place on a daily basis.
Lynnette Weese, LAM Liaison in Utah, has made it her goal to visit every medical center in the state of Utah. She has plans to share her LAM journey with doctors in every ER along with pulmonologists at every medical center she visits. Along the way, the University of Utah invited Lynnette to join them at their booth at the KUTV2 News Health Expo. Lynnette shares with us, they estimated about 9,000 people attended the Health Expo. “I didn't really stay behind the booth waiting for people to approach. I approached people who walked by and dared them say lymphangioleiomyomatosis. I'll admit it isn't easy for me; I'm not comfortable in front of people. But it was good.” Lynnette did such a nice job that the University of Utah has asked her to join them at future health fairs.

Rosanne Morris teamed up with LAM Liaison, Audrey Knipe, for an event called "First Fridays".  It is a monthly social gathering of over 1,500 women in Denver, Colorado.  Rosanne and Audrey handed out “…but you look so healthy!” brochures, coffee mugs, and water bottles from The LAM Foundation. Audrey shares, “many women were surprised to hear of a lung disease that mainly affects women and they were appreciative of the information.”

In Gillette, Wyoming, Rhonda Officer took the opportunity to speak with her newly joined PEO group. This is an all-women’s group that promotes education for women.  Each monthly meeting has to include an educational presentation. Rhonda took the reins and presented on her journey with LAM. She also took the opportunity to share a video presentation Lisa Henske, MD, from Brigham and Women’s Hospital gave at LAMposium last year. Rhonda said, “I’m not comfortable as a public speaker, but I accepted the invite both as a challenge to myself, but mostly to spread awareness.  PEO is a great group to present to because it’s all women.  Some of the ladies were in health care, and they had the most questions.  I could do this again and will if I get invited.  Dr. Henske’s video helped take some of the pressure off.”

Lynn Gayten was invited by her Pulmonologist, Thomas C. Corbridge, MD, to speak to the first year medical students at Northwestern University Feinberg School of Medicine. Dr. Corbridge shared Lynn’s PFTs, chest x-rays and CT Scans. He then went into detail about the symptoms, diagnosis and treatment for LAM. Lynn talked about being diagnosed in 1993, 6-8 weeks after a spontaneous 100% pneumothorax of right lung.  Lynn shares her experience with speaking to the students, “When I looked out and made eye contact with the audience, several times during the lecture, the students were  so attentive - they were hanging on to our every word. Their applause was thunderous. Dr. Corbridge was still talking about how well the presentation went, weeks later.”

We are certain there are many more women sharing their journey with LAM all across the country. If you have an opportunity to present to a group and would like materials to share, give us a call at the Foundation, 877.287.3526 or send us an email at info@thelamfoundation.org. Please give us three weeks to gather your materials and for the USPS to deliver the collateral materials.

The First Regional LAM and TSC Conference is Taking Place in Nashville in April

The LAM Foundation and the Tuberous Sclerosis Alliance are partnering to host a regional educational conference in Nashville, TN, Seattle, WA, and Cleveland, OH. 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/or TSC.
 
The first meeting in this conference series is taking place on Saturday, April 16 in Nashville, TN at the Monroe Carell Jr. Children's Hospital at Vanderbilt from 9:00am to 4:00pm. There will be a variety of joint presentations and breakout sessions addressing LAM and TSC disease management, research, genetics and quality of life. 
Click here for an updated agenda.

DETAILS
Date: Saturday, April 16, 2016
Registration begins at 8:00am
Conference runs from 9:00am - 4:00pm
Location: Monroe Carell Jr. Children's Hospital at Vanderbilt 
2200 Children's Way
Nashville, TN 37232
RSVP by Wednesday, April 6 by clicking here.

Thanks to generous donors and sponsors, these conferences are free to women with LAM, family and friends. 

Save the date and join us as The LAM Foundation and The Tuberous Sclerosis Alliance will host two additional meetings in this series:

Seattle, Washington at Swedish Medical Center on Saturday, June 11, 2016

Cleveland, Ohio at the Cleveland Clinic on Saturday, November 5, 2016

For additional questions contact The LAM Foundation by email at info@thelamfoundation.org or call us at 877.287.3526

Upcoming Events

Region 1 (CT, MA, ME, NH, RI, & VT)
LAM Educational Meeting
April 2, 2016

Brigham and Women’s Hospital
Carrie Hall
75 Francis Street
Boston, MA 02115
11am - 2pm
As part of its annual Board of Directors meeting, The LAM Foundation, in partnership with Brigham and Women’s Hospital will host a Patient & Family Meeting and Luncheon for those affected by lymphangioleiomyomatosis (LAM). Please join us to hear the most up-to-date research and clinical advances in diagnosing and treating LAM.
RSVP by March 25th to: info@thelamfoundation.org

Region 1 (CT, MA, ME, NH, RI, & VT)
Laughs for LAM
April 8, 2016

Club Comedy
585 South Main St
Naugatuck CT 06770
Come join Madeline Nolan for a night of laughs. Tickets are $20 and there is a set limit available to buy.
Contact Madeline Nolan at curelam@aol.com.

Region 10 (IL)
LAM Educational Meeting
Saturday, April 9th, 2016

11:00am to 5:00pm
Loyola Stritch School of Medicine  
Meet members of the LAM Clinic Multidisciplinary Team including LAM Clinic Director, Dan Dilling, MD.
Lunch is provided and validated parking is available. 
Please RSVP by Sunday, April 3.
Region 10 LAM Co-Liaisons
Kathy Peiffer:  815.245.8616 or kdpeiffer@ameritech.net
Marie Glasby:  847.276.5110 or glasbyx5@yahoo.com

Region 14 (Eastern TX, Eastern OK, AR & LA)
2nd Annual Slam LAM 5k Walk
April 9, 2016

Residents Club Central in Summerwood
14111 Summerwood Lakes Drive
Houston, TX 77044
7:30am start time
Registration for the 5k is $25 for adults and $15 for children 12 and under.  All registrations received by March 18 will receive a goodie bag and event T-shirt. After March 19th registration will increase to $35 for adults and $25 for children. 

Click here for more information or to register.

Region 8 (AL, MS, & Western TN)
Save the Date
2016 Regional TSC & LAM Conference Series
April 16, 2016

Monroe Carell, Jr. Children’s
Hospital at Vanderbilt
2200 Children's Way,
Nashville, TN 37232
8:30am Registration - 4:00pm
RSVP by Wednesday, April 6 by clicking here.


Region 7 (FL)
Save the Date
LAM Educational Meeting
May 21, 2016

Mayo Clinic Jacksonville
More information to come.

Region 18 (OR & WA)
Save the Date
2016 Regional TSC & LAM Conference Series
June 11, 2016

Swedish Medical Center
Seattle, WA
8:30am Registration - 4:00pm
More information to come.

Region 18 (OR & WA)
Save the Date
LAM Educational Meeting
June 12, 2016

Oregon Health and Science University
Portland, OR
Time - TBD
More information to come.

Region 10 (IL)
Tee It Up for LAM! Golf Outing to benefit The LAM Foundation
Friday, June 24, 2016

Whisper Creek Golf Club
12840 Del Webb Blvd
Huntley, IL 60142
Entry Fees: $125 per Golfer / $400 Foursome / $30 Dinner only
Included: Lunch, 18 holes Golf w/cart. Course Games and Prizes, Dinner
Schedule of Events:
Bag Drop & Registration: 11:00 am -12:45 pm
Warm-up: 11:30 am -12:45 pm
Tee Off: 1:00 pm
Dinner and Silent Auction: 6:00 pm
Questions, want to help, or register please call the Peiffers at 815-245-8616 or the Glasbys at 847-276-0572.  You can also send emails to glasbyx5@yahoo.com or kialam07@gmail.com.

Region 9 (IN, KY, OH, & WV)
Save the Date
2016 Regional TSC & LAM Conference Series
November 5, 2016

Cleveland Clinic
Cleveland, OH
8:30am Registration - 4:00pm
More information to come.

30 Riders in the Million Dollar Bike Ride

The LAM Foundation's Easy Breathers Cycling Team is 30 riders strong. The most riders of any other orphan disease team to ride in the 3rd annual Penn Medicine Orphan Disease Center (ODC) Million Dollar Bike Ride (MDBR). The MDBR takes place on Saturday, May 7 in Philadelphia.
 
If you would like to support the LAM Easy Breathers Cycling Team, you can go to the LAM Foundation’s giving page by clicking here

Or you can support individual LAM Easy Breather Riders who are raising money on their individual PENN Giving Pages. Here are some of their stories:

Alice Ho
This May, our family, ranging from 48" to 68" tall, will be pumping our legs as we ride through the streets of Philadelphia!  Funds raised for this charity bike ride will go toward researching treatment and cure for LAM, a progressive disease that afflicts our dear friend Florence Lu. The four of us love our dearest Florence and are hopeful for progress in finding an effective treatment and, one day a cure, for this incurable disease. To support Alice's page click here.
Gina Lorenzen
Help Gina Lorenzen celebrate 13 years post double lung transplant by donating to her efforts to ride 33 miles with the LAM Easy Breathers Team, by clicking here
Danielle Colangelo

It is almost that time of year again for the Million Dollar Bike Ride in efforts to raise money for a rare disease that I was diagnosed with two years ago. Since this disease has been first diagnosed a tremendous amount of progress has been made in an attempt to find a cure, but there is still a lot of research that needs to be done. Click here to support Danielle.
Patti Bebien-Aronoff
I was diagnosed with LAM in May 2012 and have been involved with the LAM Foundation since then. I am lucky that my LAM is mild and does not prevent me from doing the things I like to do. 
This past year I have seen too many LAM sisters leaving us. That is why I am dedicating my bike ride to their memory. Support Patti's page by clicking here.
 
Support the team today, all donations, up to $50,000, will be matched dollar for dollar by the Penn Medicine Orphan Disease Center.

Community Fundraisers LAMplified!

The LAM Foundation is excited to share with you a group of community fundraisers who are stepping up and taking on the Foundation’s LAMplify Challenge Grant. By taking on the LAMplify Challenge Grant, the Foundation is doubling the amount of money the fundraisers raise, doubling the impact of their events. Please help us recognize the following community events by sharing their webpages on social media, donating to their event, or simply by joining them at their events. 
  • Joanne Unger is raising $10,000 to celebrate her 10 year Post Lung Transplant Anniversary through her Friends Asking Friends website
  • The Newland Communities is hosting the SLAM LAM Charity Walk on April 9 in Houston, Texas, to raise $40,000 on behalf of a longtime Summerwood resident and Newland employee, Kathi Hawn. 
  • Morphotek is hosting their 3rd Annual Golf Outing on April 11 outside of Philadelphia. This year they are working to raise $10,000, all proceeds are going to The LAM Foundation.
  • Andrea Slattery, Board Chair of The LAM Foundation, will host the 2nd Annual Merion Cricket Club Event at the beginning of May with a goal of raising $50,000. 
  • The Pontz family is hosting a “Day of Discovery” on June 11 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, are on their way to raise $10,000 for the Foundation.
If you are planning a LAM Community Fundraiser this year and plan to raise $5,000, $10,000, or even $20,000, ‘LAMplify’ your event with a LAMplify Challenge Grant.
 
LAMplify was created as a challenge grant program to encourage local community-based LAM fundraisers. Just like previous donations, all LAMplify program donations go toward funding LAM research, supporting LAM patients and providing better access to expert healthcare. 

The Foundation will give you all the tools you need to make your event a success. Just call us at 877.287.3526 or send an email to info@thelamfoundation.org for more details about how you can 'LAMplify' your efforts and DOUBLE THE IMPACT OF YOUR NEXT LAM COMMUNITY FUNDRAISING EVENT!

Trials & Studies


NEW PHASE OPEN - "SAFETY AND EFFICACY OF SARACATINIB IN SUBJECTS WITH LYMPHANGIOLEIOMYOMATOSIS (LAM) 9SLAM-2)"
Dr. N. Tony Eissa at Baylor College of Medicine
Who will be included in this study? Women 18 years and older who have LAM.

How long will you be in the research study?
You will be in the research study for up to 12 months. Study drug will be given for up to 9 months.

What is involved in the research study?
You will be 125 mg saracatinib for up to nine months.

Study Visits: The study schedule will include about 7 visits
CONTACT:
Caryn O. Pope, BSN, RRT, RCP
Clinical Research Coordinator
Baylor College of Medicine - Ben Taub General Hospital
Medicine:  Pulmonary/Critical Care
1504 Taub Loop - 6PF 80-02
Houston, TX 77030
713-873-2471 (office)
713-796-9351 (fax)
cpope@bcm.edu
CLICK HERE for more details

"BUILD" Biomarker Utility in LAM Diagnosis  
Dr. Lisa Young at Vanderbilt University
Do Not Need to Travel
PARTICIPANTS WANTED FOR BIOMARKER RESEARCH in TSC AND LAM

Who?: Females age 13 and older who have been diagnosed with LAM, either Sporadic LAM or TSC associated LAM

Please note: Diagnosis of TSC is not required

CLICK HERE for more details

MIDAS Trial
Dr. Francis X. McCormack
Do not let the title of the study confuse you.  Any woman diagnosed with LAM is eligible to participate.  It is important that all women with LAM at least contact the study coordinator to discuss the details of the study.  NIH Continued funding of this study is dependent on Dr. McCormack and the other site's ability to enroll as many women with LAM as possible in the first few months...Multi center International Durability and Safety of Sirolimus in Lymphangioleiomyomatosis Trial (MIDAS Trial)

CLICK HERE for more details
 
Safety Study of Simvastatin (SOS)
Dr. Vera Krymskaya
CLICK HERE for more details.
 
Study of the Disease Process of LAM
Dr. Joel Moss
CLICK HERE for more details.

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