The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research. We are dedicated to serving the scientific, medical and patient communities by offering information, resources and a worldwide network of hope and support.
International LAM Research Conference & Patient and Family LAMposium
Click here to view the 2014 Scientific Schedule.
Click here to view the 2014 Patient/Family/Friend Schedule.
Your Daily Vote Could Raise $100,000 for The LAM Foundation
LAM patient Rebecca Nissly of Pennsylvania nominated The LAM Foundation in the Metamucil "Do More Than You Think" Contest sponsored by The Procter & Gamble Distributing, LLC. We are very excited that The ALM Foundation was chosen as one of the top ten potential finalists. But we need your help. Your daily vote on the contest website could help earn $100,000 for The LAM Foundation. Click here to learn more about the contest. Click here to start your daily voting.
NEW at LAMposium!
Collaboration is key to any successful endeavor.
Join us by participating in two new activities we will be showcasing at LAMposium:
Click here to view a PowerPoint presentation on the LAM Community Poster Session.
Click here to view a PDF to learn more and start your own LAM Community Poster.
Click here for the LAM Community Poster Session Application.
Click here to learn more about participating in our LAM Story Booth.
Silent Auction and Take A Chance Raffle
Looking for an easy way to help out at LAMposium? You can do so by helping us collect items for the Silent Auction and Take A Chance Raffle. We can use most items or services that are national and can travel well. Gift certificates, services, gift baskets, jewelry, and even timeshares or vacation homes have been donated in the past. We can use just about anything! To donate an item to the Breath of Hope silent auction, please contact Sylvia Richard at firstname.lastname@example.org or Kerri Byrnes at email@example.com.
Raffle tickets are now available! We have 3 fantastic prizes this year. First prize is a 4 night stay in the Dominican Republic at the Pete Dye Golf Lodge Casa De Campo valued at $2,500. Second and third place prizes are both trips to Palm Springs valued at over $1800. Tickets are 1 for $25 or 5 for $100 with all proceeds benefiting the Foundation. If you are interested in purchasing or selling tickets please contact Kerri Morgan Byrnes at firstname.lastname@example.org or 513.777.6889.
February 28, 2014
Click here to read the February issue of CURRENTS.
January 31, 2014
Click here to read the January issue of CURRENTS.
Million Dollar Bike Ride
The LAM Foundation has been invited by The Penn Medicine Center for Orphan Disease Research and Therapy (CODRT) to participate in “The Million Dollar Bike Ride” in Philadelphia on May 3rd, 2014. The goal for the bike ride is to raise $1 million for research in rare diseases, including LAM.
We are proud to announce that Patricia Ortiz is the team captain representing The LAM Foundation’s cycling team. Please consider joining our team “The LAM Foundation Easy Breathers”, in this collaborative effort to raise funds for research in rare diseases.
Click here to learn more about the event and how to get involved.
Click here to register to join the Easy Breather’s team and ride in the Million Dollar Bike Ride.
Click here to view the design and purchase a LAM Foundation Easy Breathers Team cycling jersey or cycling kit.
We partnered with ZOCA Gear to present you with an exceptional design and the finest quality of cycling garments. ZOCA is proudly made in the USA and generously offered to donate a portion of the proceeds from the sale toward our fundraiser.
The team store will be open from Monday, Feb 10 through Friday, Feb 21. All orders will be processed and shipped starting March 21st. Shipping will approximately take one week within the US, depending on the destination. Please note that we need to receive a minimum order of six pieces per style (for example six woman’s jerseys of any size or six men’s jerseys of any size) to fulfill the order.
We hope to see many of you at the Million Dollar bike ride in May!
For more information, contact Sylvia Richard at email@example.com or 513.777.6889.
December 3, 2013
Click here to read the November issue of CURRENTS.
December 1, 2013
Click here to view the Fall issue of Journeys.
Helping Young Women Overcome LAM, a Rare Lung Disease
November 12, 2013
LAM scientist Elizabeth Henske, MD, Director of the Center for LAM Research and Clinical Care at Brigham and Women’s Hospital, is hoping to change the lives of women living with LAM. She leads a research team that is working to improve diagnosis and test new treatments for this disease. Click here to read the full article.
October 31, 2013
Click here to read the October issue of Currents.
NORD and The LAM Foundation in the Wall Street Journal
October 4, 2013
To keep the LAM community informed, we wanted to let you know that the following op/ed piece from NORD was published in the Wall Street Journal (print and online editions) click here to view the article.
New Executive Director
The LAM Foundation and their Board of Directors is very pleased to announce that Susan Sherman, MHA, has accepted the position of Executive Director. Sue is a seasoned healthcare executive who has contributed to the advancement of health and the healthcare industry for more than 20 years. She holds a master of health administration from Xavier University in Cincinnati, Ohio, and has diverse industry expertise including healthcare marketing & operations, non-profit management, new business development and executive leadership development.
From her unique career experiences Sue has developed a rich appreciation for the different perspectives held by patients, families, physicians and healthcare executives with regard to the current and upcoming changes facing the US healthcare industry. She has held senior level consultant and chief/vice president executive positions for hospitals and integrated healthcare delivery systems, agencies, behavioral health facilities, non-profit foundations and franchise companies.
Sue is thrilled to join The LAM Foundation and is eager to get to know everyone. She believes that her position as Executive Director will provide her the perfect opportunity to use her skills and expertise to make a difference for the LAM community. Please feel free to contact Sue at firstname.lastname@example.org.
Personal Journeys With LAM
The LAM Foundation is pleased to offer LAM patients an electronic copy of Personal Journeys With LAM, a collection of stories written by women who are living with LAM. It’s our hope that you’ll feel inspired as you read these personal stories of courage and determination.
An electronic copy was emailed to all LAM patients who have given the Foundation their email address. If you did not receive this email and would like to have an electronic copy of Personal Journeys With LAM please email Sally Lamb with your request. Her email is email@example.com.
Please note: Personal Journeys With LAM is to be considered private and confidential. Therefore, it’s very important that you not share your copy with anyone (family, friends, etc.) or post it on any social media. Please be respectful to those who have written and shared their personal story so that you can feel connected to others and feel less alone in your own journey with LAM.
New VEGF-D Article Published in The Lancet Respiratory Medicine
June 24, 2013
Congratulations to the MILES team for the publication of another important study. Using data from the MILES Trial, the group reported that high vascular endothelial growth factor D (VEGF-D) levels predict response to treatment with sirolimus. Serum VEGF-D now has two clinical uses, as a diagnostic tool that obviates the need for lung biopsy in some patients, and to help with decisions regarding treatment. Thank you again to all patients who participated in MILES Trial.
Click here to read the article published in The Lancet Respiratory Medicine.
LAMposium Patient Session Videos
Click here to check out 6 videos from the patient sessions at LAMposium. Scroll down to the patient sessions section to view the videos or listen to audio from the event.
NIH Grant Supports BCM Research For Lymphangioleiomyomatosis Treatment
June 19, 2013
Click here to read this exciting article about Dr. N. Tony Eissa from Baylor College of Medicine and the grant he is receiving.
URMC Opens Clinic, Initiates Research on Rare Lung Disease in Women
May 14, 2013
Congratulations to our newest LAM Clinic, located in Rochester, NY, on this great article. Click here to view article. Be sure to listen to the very informative video included in the article.
LAM Cells Are Addicted to Glutamine
May 9, 2013
LAM Foundation-funded scientists Alfredo Csibi and John Blenis (Harvard Medical School) recently reported in the journal Cell that mTORC1, the protein that drives cell growth in LAM, directly stimulates the uptake and metabolism of glutamine, the most abundant amino acid in the body. The authors showed that mTORC1 regulates glutamine metabolism by repressing the mitochondrial protein SIRT4, which inhibits one of the steps required to produce energy from glutamine.
Importantly, their study suggests that therapies aimed at targeting nutrient metabolism could be efficacious in diseases with deregulated mTORC1 signaling including LAM.
Congratulations to Drs. Csibi and Blenis!
Click here to read the article in Cell (Cell 153, 1–15, May 9, 2013).
LAMposium Photos and Slideshow
Click here to view the LAMposium 2013 Slideshow created by Gina and Jurgen Lorenzen. This slideshow is created from all the pictures they took from the conference.
Click here to view and purchase photos from LAMposium 2013, the password is all4lam. All proceeds benefit the Foundation.
Emergency Room Quick Facts Card for LAM
The LAM Foundation is excited to offer LAM patients an easy way to provide doctors in the ER with information about LAM. We have designed a small card (the size of a typical business card) that is easy to carry and contains helpful information that you can share with the doctor when you go to an ER. The card can be inserted into a luggage tag and attached to a purse for easy reference.
Click here to print as many cards as you’d like using Avery 5881 business cards (perforated) or on card stock (hand-cut to size). You can also email the Foundation and request that a card be sent to you.
The Sirolimus and Autophagy Inhibition in LAM (SAIL) research trial is currently seeking women with LAM
Brigham and Women’s Hospital, in Boston, MA is currently enrolling women with Lymphangioleiomyomatosis (LAM) in a clinical trial to test the safety of sirolimus (Rapamycin) in combination with hydroxychloroquine. All subjects will receive study drug provided by the trial.
Participation requires 7 visits over 1 year and involves physical exams, blood and urine samples, X-rays, CT scans, MRIs, breathing tests, exercise tests, questionnaires, and an at-home diary.
For more information including risks and study procedures please contact Betsy Peters, RN at 617-525-9331 or email at firstname.lastname@example.org.