From William Repicci, President & CEO
This month, LE&RN began its Annual Appeal to those dedicated to seeing new treatments and cures for lymphatic diseases (LDs), and support services for those living with these diseases. We seek investment rather than gifts. This means we need to deliver on those investments. If you’ve been keeping up with LE&RN’s newsletters and eblasts, you’ve seen your support paying incredible dividends.
The field of lymphatics is transforming at breakneck speed. We are now center stage after a history of being off the radar of our government and medical institutions. A few years ago, our Centers for Disease Control & Prevention defended not having a webpage on secondary lymphedema (LE). Today, we begin the second year of a three-year national lymphedema awareness campaign. In 2021, the Director of the National Institutes of Health explained to Congress that he had no idea of what LE/LD research NIH was doing since they didn’t have categories for these. Today, NIH has categories for both LE and LD. Your lobbying efforts called on Congress to request a National Commission to study the need for lymphatic research. This month, NIH called together an Advisory Committee to begin this process. Then there is our success in getting Congress to authorize LE/LD research under the $400M annual Dept. of Defense medical research program.
Also in October, LE&RN announced our newest Comprehensive and Network global Centers of Excellence in the Diagnosis & Treatment of LDs. From Johns Hopkins Hospital in Maryland to Aristotle University in Thessaloniki, Greece, there are now over 40 worldwide Centers addressing the needs of those living with LDs.
All this is possible because of your advocacy. We are proud to partner with you in this common cause.
With great pleasure, I present our latest issue of Lymphedema & Lymphatic Disease Matters.
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2022 PA Run/Walk to Fight Lymphatic Diseases (LD)
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Photo: Veronica Seneriz, Megan Felter and Katie Mulligan
LE&RN congratulates the Philly Tri-State Chapter on its inaugural 5K Run/Walk to Fight Lymphatic Diseases (LD), held on October 9, 2022 at the Philadelphia Zoo. Run Wild With LE&RN at the Philadelphia Zoo was attended by a passionate and committed group of activists, led by Co-Chairs Megan Felter and Katie Mulligan. Patient Services Director Veronica Seneriz presented Megan with the Chapter Champion award during the ceremony. We extend our thanks to all who donated to raise over $15K, exceeding our goal of $10,000. Visit our Chapter Page to learn more about US and international chapters.
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LE&RN proudly brings you this MUST-READ interview with Michael Masters, the primary investor and CEO of Celltaxis, LLC. Under Mr. Masters' leadership, Celltaxis is embarking on a clinical stage study to explore a potent immune system modulating drug, Acebilustat. When LE&RN recently interviewed Mr. Masters he told us, “We believe that when taken orally once a day, Acebilustat may help reduce the inflammatory pathology and abnormal skin thickening of lymphedema (LE).”
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Announcing newly designated LE&RN Comprehensive and Network Centers of Excellence
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In October, LE&RN announced newly designated Comprehensive and Network Centers of Excellence in the Diagnosis and Treatment of Lymphatic Diseases (LD). These institutions now join our current list of Centers around the globe.
Beginning in November 2022, we will be accepting Letters of Intent from institutions interested in applying for consideration as future LE&RN Centers of Excellence.
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Watch "Breakthroughs for Breast Cancer" video featuring LE
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In honor of Breast Cancer Awareness month, ABC-TV in New York City aired "Breakthroughs for Breast Cancer"—a special highlighting the latest developing treatments, cutting-edge advances, and breakthroughs made through the stories of women whose lives have been changed due to breast cancer.
At the ten-minute mark of the piece, surgeon Dr. Sheldon Feldman of Montefiore introduces a new procedure that drastically reduces chronic conditions caused by breast cancer surgery and helps to eliminate the pain and swelling of lymphedema (LE).
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In the Spotlight: Boston Lymphatic Center, a LE&RN Center of Excellence
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The Boston Lymphatic Center (A Joint Program between BIDMC & Boston Children’s Hospital, teaching affiliates of Harvard Medical School) has been awarded LE&RN's Comprehensive Center of Excellence designation.
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Will Miles Tells His Story for LE&RN's Annual Appeal
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Will Miles is a young man living with lymphatic disease. We asked him to tell us what it's like to live with primary lymphedema and to encourage you to give to our annual appeal. To read Will's full story, please visit this page.
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Groundbreaking progress as National Commission on Lymphatic Diseases moves forward
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l-r: William Repicci (LE&RN), Dr. Gary Gibbons (NHLBI Director), Dr. Stanley Rockson (Stanford/LE&RN), Zorina Galis (NHLBI Program Officer)
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For the past three years, LE&RN’s community has reached out to Congress asking that a National Commission on Lymphatic Diseases be established at the National Institutes of Health (NIH). As a result, Congress strengthened its language by requesting the establishment of a National Commission and the National Heart, Lung, and Blood Institute (NHLBI) is now working to develop a blueprint for a National Commission on Lymphatic Diseases. The NHLBI has requested that LE&RN co-founder, Dr. Stanley Rockson, work with them on this task. In addition, NIH has created categories for both LD and LE. We will now be able to measure our progress in seeing funding increases for research year by year.
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In October, LE&RN hosted A Deeper Dive Part Two: You, Me, We in the Lipedema Community: The Power of Belonging, presented by Catherine Seo, PhD, and Gail Straker, BA Ed, and a few community members.
Dr. Stanley Rockson presented Everything You Wanted to Know About the HEAL Trial and Have Been Afraid to Ask: This Is For You.
On November 17, Andrzej Stec, JDPSN & Kathy Park, JDPSN will present ZEN and the Art of Living with Lipedema: Great Challenges Offer Great Opportunities. Register here.
All past LE&RN Symposiums are available on LE&RN's website.
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Become a LE&RN Supporting Member
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LE&RN's education, research, and advocacy programs are only possible because of Corporate Sponsors and Supporting Members. Please acknowledge the support of these Corporate Sponsors (listed below) and support LE&RN through your membership.
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Upcoming Events
- November 9, 2022 - SPANISH LANGUAGE SYMPOSIUM: Primer Congreso Latinoamericano de Linfedema, presented in partnership with LE&RN. Register here. (This conference will be presented entirely in Spanish.)
- November 17, 2022 - In this LE&RN Symposium, Andrzej Stec, JDPSN & Kathy Park, JDPSN present - ZEN and the Art of Living with Lipedema: Great Challenges Offer Great Opportunities. Register here.
- December 1, 2022 - In this LE&RN Symposium, Leslyn Keith, OTD, CLT-LANA & Siobhan Huggins present - Understanding the Voices of Lipedema: Stories of Grace, Hope & Resilience. Register here.
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