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From Sue Sherman, Executive Director

Welcome to the final edition of Currents for 2016! We are entering the final month of the year with tremendous momentum. Below you will read about the new US LAM clinic in Phoenix, AZ, and national news coverage about the benefits of playing the harmonica for people with lung disease.

Not to be outdone by the patient community, our scientists met in Scottsdale, AZ, for The LAM Foundation’s second annual Grant Study Section. Twelve members of the Scientific Advisory Board gathered to review and discuss the most promising new LAM research proposals, making recommendations for which should be funded by the Foundation. These globally-recognized scientists donated their time and expertise, engaging in important dialogue about each application and also contributing to a discussion about the future of LAM research.

We express our sincere gratitude to the following people for making this successful meeting possible:

Steve Hammes, MD, Grant Program Chair, Frank McCormack, MD, Scientific Director, James Bridges, PhD, Jilly Evans, PhD, Geraldine Finlay, MD, Joel Moss, MD, PhD, Cheryl Walker, PhD, Kathryn Wikenheiser-Brokamp, MD, Ray Yeung, MD, Lisa Young, MD, Mike Dellinger, MD and Judy Sheridan.

Thank you to everybody who liked, shared, and donated on #GivingTuesday! With your help, we were able to replenish the LAM Family Network fund. This will allow us to bring more women with LAM to next year’s two LAMposium conferences. We appreciate your support.

Please enjoy this edition of Currents.

Phoenix is Home to our 32nd US LAM Clinic

The LAM Foundation welcomes St. Joseph’s Hospital and Medical Center in Phoenix, AZ, to our US LAM Clinics and Research Network. Sofya Tokman, MD, and Rajat Walia, MD, already provide care for several LAM patients and their experienced care team is excited to join the network.

The LAM Clinic team at Norton Thoracic Institute, the pulmonary arm of St. Joseph’s, prides itself on providing multi-disciplinary patient care. The team is comprised of pulmonologists, surgeons, a psychiatrist, advanced practice providers, nurses, social workers and financial analysts, which allows for a uniquely holistic approach to health care.

To schedule an appointment at the St. Joseph clinic contact Leticia “TC" Gordon by phone at 602-406-8187, or click here to find a LAM Clinic close to where you live.

Popularity of a Harmonica Band Is Spreading

A small news article in the October issue of the Ann Arbor Observer, a monthly publication of events in the city, has launched the popularity of the harmonica group at the University of Michigan Pulmonary Rehab. Our very own Patrice Rubadeau, PhD, is the group’s leader!

Word is spreading about the benefits that come from breathing in and out while using a harmonica. This therapy helps patients with chronic lung conditions exercise their chest muscles and develop greater control of their breathing.

Shortly after the Ann Arbor Observer published the article, Pat and the members of the U of M Tuesday morning group were interviewed by the Wall Street Journal. The club hit the “big time” when the WSJ article was published online on October 31 and in print on November 1.

But the story doesn’t end there! Numerous internet news outlets and print publications have picked up the story. A PBS Facebook page displayed a photograph of the group and linked it to nextavenue.org.

AARP has requested photographs of the harmonica group, though nothing has been posted yet on AARP.org or on the AARP mobile app. Pat is waiting to hear when her radio interview will play on the North Georgia station WDUN. She’s even spoken with a pulmonary rehab coordinator in Connecticut who requested information about adding a harmonica component to their program.

Most recently, Pat was interviewed by former New Jersey Senator Bill Bradley for his American Voices program on SiriusXM Radio. Every time she is interviewed, Pat works extremely hard to promote LAM awareness, but unfortunately, information on LAM has not survived any of the final edits. The focus of each article and interview has been solely on the benefits of playing the harmonica for chronic lung conditions.

We will share with the LAM Community when you can listen into the interviews. Thank you, Pat, for volunteering your time to the harmonica club and for stepping up to share LAM Awareness!

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 2016 International 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.

Kelsey took some wonderful photos, and we are thrilled to share all of her photos with you. 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.

Join Us in 2017 as LAMposium Goes Coast to Coast!

International Research Conference on TSC and LAM & LAMposium DC

Join us for LAMposium in Washington, DC, June 22 – 25, 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 our 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, DC 20001

Patient Benefit Research Conference & LAMposium Los Angeles

The LAM community along with LAM researchers and clinicians will gather in southern California November 9-12, 2017. The research focus of this meeting will be finding new therapies or products that will offer benefits in five years or less to women living with LAM. This research conference will be modeled after the LAM Biomarker Innovation Summit hosted in Atlanta in 2014. The new format will include discussions about 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

Stanford LAM Education Meeting

LAM Liaisons Shellie Owens and Susan Jacobs, RN, MS, hosted a “Fall Fling” in San Francisco at the Stanford University Medical Center. Over 30 people came to the afternoon potluck gathering to hear LAM Clinic Director Stephen Ruoss, MD, share his insights from the 2016 International Rare Lung Diseases Research Conference and LAMposium.

One woman was able to participate in the afternoon’s presentations through Skype. Dr. Ruoss was very generous to answer everyone’s questions, and offered helpful dialogue for all who attended.

Charleston, SC, Gathering Offers Five Presentations

It was an impressive lineup of presenters and topics at a fall LAM gathering in Charleston, South Carolina. LAM Liaison Susie Picart planned the education meeting and welcomed 12 women with LAM along with their family and friends to the Medical University of South Carolina in Charleston this past month.

Our Executive Director, Sue Sherman, was in town to kick off the mini-conference with news taking place at the Foundation. Rahul Argula, MBBS, presented on "CT Scans in LAM", Kimberly Brown, MS, a certified genetic counselor, offered "How Do You Know If You Have TSC?”, Susie’s husband, Jose Picart, Professor of Counselor Education, led a discussion on "Coping Strategies - Ways to Deal with Your Diagnosis" and finally LAM Clinic Director Charlie Strange, MD, shared his highlights from the 2016 International Rare Lung Diseases Conference and LAMposium. For some in attendance, this was their first time attending a LAM Educational meeting, and this certainly was an informative gathering.

The LAM Foundation & TS Alliance Rock Cleveland

The LAM Foundation and the Tuberous Sclerosis (TS) Alliance gathered patients, family and friends together at the Cleveland Clinic for the third in a series of joint meetings held across the country. The meeting was hosted by Robert Kotloff, MD, LAM Clinic Director and Ajay Gupta, MD, who runs the Tuberous Sclerosis Clinic at the Cleveland Clinic.

The day started off with a joint presentation from Anne McKenna, Patient Services & Education Manager of The LAM Foundation, and Kari Rosbeck, Executive Director of the TS Alliance. This was followed by a presentation by Steve Roach, MD, who talked about the diagnostic criteria for tuberous sclerosis complex (TSC) and research updates on TSC and LAM by Drs. Gupta and Kotloff.

Following the opening session, attendees went into breakout sessions that covered more specific topics, including quality of life tips and kidney issues from experts at the Cleveland Clinic. The day wrapped up with a very interesting session about the genetics of TSC and LAM by Jennifer Glass, MS, LGC, CGC, from the Cincinnati Children’s Hospital Medical Center.

It was a great day of learning and fellowship that helped us to understand both diseases and the connections between them better. We look forward to continuing this partnership with another joint meeting in Houston, TX, in April, as well as the International Research Conference on TSC and LAM & LAMposium in Washington, DC, June 2017.

Informative and Interactive Gathering in Portsmouth, NH

Fourteen women with LAM and their family members gathered in Portsmouth, NH, for a presentation from Brigham and Women’s Hospital LAM Clinic Director, Souheil El-Chemaly, MD.

LAM Liaison Madeline Nolan welcomed everyone at a community center where Dr. El-Chemaly answered everyone’s questions, offered updates on LAM Research and shared his experience at the September RLDC•2016•LAMposium. Ellen Buck said, “It is so beautiful in Portsmouth, NH. It was an excellent conference. Dr. El-Chemaly helped us to understand everything and group involvement was exceptional.”

Members of the SAB Gather with the Scottsdale LAM Community

A gathering of The LAM Foundation’s Scientific Advisory Board (SAB) in Scottsdale, AZ, was the perfect opportunity to connect LAM experts to women with LAM who live in the region. An evening reception at the McCormick Ranch gave 12 women and their families a chance to learn about LAM research updates from Dr. Frank McCormack and connect with LAM experts from around the country.

LAM Liaison Belinda Romney planned the evening and was especially excited to introduce members of the SAB to Sofya Tokman, MD, and staff from St. Joseph’s Hospital and Medical Center, The LAM Foundation’s newest LAM Clinic.

Fall LAM Gathering in Chicago

“Simply sharing stories and ideas of how to manage LAM is the most significant benefit of the regional meetings,” said LAM Liaison Kathy Peiffer as she reflected on the latest LAM regional gathering in Chicago. Kathy and co-Liaison Marie Glasby hosted an educational meeting this past month attended by nine women with LAM and their families.

The potluck gathering at Marie’s home included watching Dr. Frank McCormack’s LAMposium presentation, “LAM Pearls: 10 Things I Want Every LAM Patient to Know”, sharing information on the new ATS LAM Guidelines and registering for LAM 360, the Foundation’s new online discussion group.

The group has plans to get together more and work on regional community fundraisers.

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. 

Current Trials and Studies

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

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

Living Life. Giving Hope. 

Bailey Seay is just one of the many women with LAM who inspire us on a daily basis. After her diagnosis, Bailey chose to embrace life. She and her husband created a bucket list for their family, determined to live life to its fullest.

The LAM Foundation has our own bucket list, and we need your help to accomplish our biggest goal: finding a cure for LAM. Watch your mailbox for Bailey’s Bucket List!

Help us give hope. 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 
www.thelamfoundation.org

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