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From Sue Sherman, Executive Director

In October I was invited to speak at the Brazilian Thoracic Society meeting and at the sixth Meeting of the Alambra, the Brazilian equivalent of The LAM Foundation. Many of you knew the founders of Alambra, Simone Garcia Ribeiro and Flavia Patitucci Sobroza. Both were much loved by the global LAM community, and sadly, both women lost their battle with LAM, passing away in 2011 and 2015 respectively. Like our founder Sue Byrnes, they were passionate women who cared deeply about their LAM family and who worked tirelessly to build strong relationships with scientists and clinicians, with a goal to improve the lives of those living with LAM in Brazil. Also similar to Sue, they created a legacy of compassion and perseverance that is carried forward by the new leaders of Alambra, Carmelina Moura and Maria Clara Castelloes, and caring clinician-scientists who remain dedicated to LAM, Drs. Bruno Baldi and Carlos Carvalho.

It was an honor to share our story of success in the United States and the optimism that was conveyed at our LAMposium in September about the future of LAM. It seems that no matter where we are in the world, the LAM community is truly special, sharing essential bonds between compassionate doctors, caring families, excellent researchers and dedicated leaders.The language may be different and the cultures diverse, but LAM brings out the best in those who want to solve it. We have much to learn by connecting our efforts globally.

RLDC•2016•LAMposium and
Breath of Hope Gala Photo Gallery

We are so excited to share with you all of the photos taken from the Rare Lung Diseases Research Conference, LAMposium and Breath of Hope Gala. Many thanks to Kelsey Adams for all of her work at the conference, she took some wonderful photos.

We are thrilled we can share all of her photos with you. And a special thanks to Jen Fujikawa for gathering Kelsey’s photos and putting them into a gallery for us to view, download, save, share, post and purchase.

Click here to get directions to access the photo gallery.

The MILED is Funded: $3.6 Million Grant from NIH

Frank McCormack, MD, Scientific Director for The LAM Foundation, announced a $3.6 million grant from the National Institutes of Health to fund a new five-year Multicenter International Durability and Safety of Sirolimus in LAM Trial (MILED). MILED is the follow-up to the groundbreaking trial, MILES, which led to the approval of sirolimus to suppress the effects of LAM. The objective of MILED is to determine if sirolimus can be used much earlier and in lower doses to maintain normal or near normal lung function in patients with mild LAM. Stay tuned for future information on when women with LAM can participate in this trial.

Exciting New LAM Research!

The National Institutes of Health (NIH) is funding a $2.1 million LAM Research Study titled: “The Molecular and Genetic Pathogensis of LAM”. This three year study brings together a unique team of leaders in LAM research to address key unanswered questions with high clinical impact.

The questions being addressed as a part of this study are:

  • What are the fundamental mechanisms leading to lymphangiogenesis in LAM?
  • Can circulating LAM cell burden be quantitated through “next generation” sequencing and used as a biomarker of LAM?
  • Will finer dissection of the genetic basis of sporadic LAM reveal generalized low-level TSC2 mosaicism?
  • Can biomarkers, including VEGF-D and microRNA, be used to develop personalized strategies for sirolimus dosing?

The impressive list of investigators involved in this project include:

Elizabeth Henske, MD, Principal Investigator
David Kwiatkowski, MD, PhD
Souheil El-Chemaly, MD
Tom Darling, MD
Vera Krymskaya, PhD
Francis X. McCormack, MD
Joel Moss, MD, PhD

LAM Clinic Director, Lisa Henske, MD, tweets, “We're so grateful to have this new support for LAM research. Five sites including Brigham & Women’s, UPenn, University of Cincinnati, NHLBI, Dream team!”

Helen Green Research Travel Fund

Women with LAM understand the importance of participating in LAM research, and one of the most comprehensive and longest running research studies for LAM is at the National Institutes of Health (NIH). For years, NIH has generously provided travel reimbursement for women with LAM to travel to the NIH to take part in the LAM protocol. This past year, patients new to the protocol had to cover their own travel expenses. When Becky Hobgood found out about this change, she decided to do something about it. 

After discussing the idea with her family, Becky and her siblings established the Helen Green Research Travel Fund, named in honor of her mother. This fund will be used specifically to help women with LAM cover travel costs associated with traveling to the NIH in Bethesda, MD, for their first visit. Subsequent visits may be covered by the NIH. 

If you are a newly diagnosed woman with LAM and are interested in finding out more about the Helen Green Research Travel Fund, or how you can participate in research, contact our Patient Services & Education Manager, Anne McKenna, at amckenna@thelamfoundation.org or 513.777.6889.

Join Us in 2017 as We Go Coast to Coast!

International Research Conference on TSC and LAM & LAMposium DC

Join us for LAMposium in Washington, DC, June 22 – 25, 2017 which will be part of a special Joint Research Conference hosted by The TS Alliance and The LAM Foundation.  LAMposium patient and family sessions will be be very similar to a traditional LAMposium, offering a range of topics about living with LAM, presented by LAM clinicians and scientists. While details are still being finalized,  there will be a Breath of Hope Gala, activities connected to our host city, Washington, DC, shared meals with LAM and TSC scientists and opportunities to meet with fellow LAM patients and families. More details coming soon.

Thursday, June 22 – Sunday, June 25, 2017
Hyatt Regency Washington on Capitol Hill
400 New Jersey Avenue, NW
Washington, D.C. 20001

Patient Benefit Research Conference & LAMposium Los Angeles

The LAM community along with LAM researchers and clinicians will gather in Southern California on November 9-12, 2017. The research focus of this meeting will be finding new therpaies or products that will offer BENEFITS in five years or less, to women living with LAM. This LAMposium will be modeled after the LAM Biomarker Innovation Summit hosted in Atlanta in 2014. The format will be new and will include discussions about new opportunities in the areas of imaging, diagnostics, biomarkers, exercise, quality of life and more. We will also host LAMposium-style patient and family educational sessions and celebrate together at the Breath of Hope Gala. Location will be announced soon!

Thursday, November 9 – Sunday November 12, 2017
Los Angeles, CA

Houston Gathering

LAM Liaison Kathi Hawn was so excited to share her LAMposium experience with women in her region, she hosted a gathering in her home just two weeks after the conference. She was also joined by some very important women who presented on new LAM research from the RLDC•2016•LAMposium. LAM Clinic Director, Rosa M. Estrada-Y-Martin, MD, MSc, from the University of Texas Health Center and Caryn Pope, SLAM trial research coordinator from Baylor University presented new information and answered questions.

Dr. Rosa talked about what she learned at the RLDC and Caryn talked about the ongoing SLAM trial. LAMMIES who attended LAMposium gave recaps too. Kathi shares, “It was a small group, so it was like having our very own roundtable discussion with the LAM clinic director - it was SO very special!! When I finally looked at the clock it was 7:15 pm (and we started at 3:00). We just sat around and talked, getting to know each other - words don't adequately express how special it was.”

St. Louis Regional LAM Meeting

LAM Liaisons Marla Hamlin and Carmen Iglesias hosted an evening LAM educational meeting in St. Louis, MO. Women with LAM, family and friends gathered with LAM Clinic Director, Adrian Shifren, MD at the Washington University School of Medicine/Barnes Jewish Hospital.

Dr. Shifren took the time to share news about all of the LAM research from the Rare Lung Diseases Research Conference and LAMposium. He even took the time to talk with those in attendance individually to answer their questions. Everyone then gathered for a light dinner and shared highlights and experiences from September’s RLDC•2016•LAMposium.

LAM Clinic Directors from the Rochester, MN Mayo Clinic Travel for a LAM Education Meeting

Dr. Jay Ryu and Dr. Teng Moua traveled to Eagan, MN, for a Regional LAM Education meeting on October 15.  It was a packed room as 25 women with LAM, family and friends gathered to listen to presentations on the newly published LAM Guidelines, new LAM research studies and the benefits women with LAM receive from exercise. The meeting was attended by some newly diagnosed women who had the opportunity to meet other women with LAM and have informative group conversations.

LAM Liaison and meeting host, Sharon Hovland shares, “The doctors took the time to answer all of our questions on a broad range of topics. Thank you for all who attended! It was wonderful to see you all and to connect with women who are new to our group."

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. 

LAPs for LAM surpasses $10,000 Goal

Congratulations to Peggy Haupt and all of those who participated in the Chowchilla LAPS for LAM! Peggy took on the LAMplify Challenge and not only met, but surpassed her goal by raising $10,000. Now every dollar collected will be matched dollar for dollar for The LAM Foundation.

October 15 was the 8th annual LAPs for LAM, a fundraiser and community awareness event that took place at the Chowchilla High School Football field. Peggy and her team walked an impressive 15 miles around the track during the day-long event. Well done team!

Current Trials and Studies

Women with LAM are always willing to step up and advance research.

Vera Krymskaya, PhD is looking for one more woman with LAM to complete her SOS study. Please take a moment to read over the eligibility requirements for this study and contact Dr. Krymskaya if you have any questions.

A listing of all of the current LAM research and trials can be found here on our website.

Help Us LAMplify Our #GivingTuesday Goal!

Mark your calendars for #GivingTuesday on November 29! After Black Friday and Cyber Monday, take time to give back on #GivingTuesday, a global day of giving fueled by the power of social media.

This year, #GivingTuesday is twice as big! Our major donors have asked us to maximize funds for the LAM Family Network (LFN) through the LAMplify Challenge Grant. LFN  is an important program that supports travel expenses for women with LAM to attend LAMposium research conferences. With two conferences coming up in 2017, we’re hoping to help twice as many women attend. If we can reach our $10,000 goal, funds for the LFN program will be doubled.

Be sure to check The LAM Foundation’s social media accounts for shareable links to engage your friends and family. Want to get a jump on #GivingTuesday? Donate to the LAM Family Network today at: www.thelamfoundation.org/Take-Action/Donate-Now.

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 
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