Lipedema Foundation

Introducing Stacey Heil, MS, MBA - Our New Associate Director of Biobanking and Accrual! We’re excited to welcome Stacey Heil to the team! With her extensive background in biorepository management and operations, Stacey brings a wealth of knowledge and experience to her role as Associate Director of Biobanking and Accrual. Holding dual master’s degrees in Biotechnology Management and Business Administration from the University of Maryland, Stacey has a unique blend of scientific and strategic expertise that will help drive innovation in our biobanking efforts. Beyond her professional accomplishments, Stacey is also deeply committed to making a positive impact in her community, dedicating her time to animal rescue and supporting causes that create change. Her enthusiasm, collaborative spirit, and passion for continuous improvement make her an inspiring addition to our team. Please join us in giving Stacey a warm welcome! We’re thrilled to have her expertise and dedication on board as we work toward advancing research and awareness.

We’re grateful for the opportunity to connect with experts and innovators at the 2024 Magee-Womens Summit in Pittsburgh! Our Chief Science Officer, Dr. Ashok Srinivasan, showcased the Lipedema Foundation’s latest work through a dedicated poster, engaging conversations at our booth, and sharing informative materials with attendees. It was inspiring to join this gathering of thought leaders focused on advancing women’s health—together, we're one step closer to uncovering more about Lipedema and supporting those impacted! #MageeWomensSummit #LipedemaResearch #Lipedema

Meet Kasi Grosvenor, MBA - Our Newest Project Manager! ?? We’re thrilled to welcome Kasi to our team! With over two decades of experience in Project Management, Communications, and Human Resources, Kasi brings a wealth of expertise to her role as Project Manager. As a patient living with Lipedema, Kasi uses her personal experience to add a unique and powerful perspective to her work. Her commitment to advocacy and outreach, shaped by her lived experience, fuels her dedication to raising awareness and connecting with the Lipedema community. When she’s not hard at work, Kasi enjoys gardening, cooking, and spending time with her family. Join us in giving Kasi a warm welcome as she begins this exciting new chapter with us!

Join us for the National Commission on Lymphatic Diseases (NCLD) Town Hall Forum I! This virtual event will bring together voices from across the lymphatic disease community to discuss the critical gaps and barriers impacting those with lymphedema, lipedema, and related conditions. ?? Date: Monday, November 18, 2024 ? Time: 9:00 a.m. – 11:30 a.m. ET ?? Virtual – Open to the public via NIH VideoCast: https://lnkd.in/eMMxddpa Attendees will hear from patient advocates, healthcare professionals, and research leaders as they explore solutions to improve healthcare access, resources, and support for those affected. Let's work together to advance lymphatic health! #NCLD #Lymphedema #Lipedema #LymphaticHealth #PatientAdvocacy

The Lipedema Foundation is proud of our Clinician’s Guide to Lipedema—a resource designed to help healthcare professionals recognize and care for patients with Lipedema. https://bit.ly/3Hvd1gn Inside, you’ll find: - Key symptoms & common presentation - Physical exam tips & patient history questions - ICD codes, treatment pathways, and referral options This resource was developed in partnership with leading clinicians to empower healthcare professionals with confidence in providing disease-specific care. ?? For patients looking to advocate for themselves, we also offer a Patient Self-Advocacy Guide to help navigate your healthcare journey. https://bit.ly/4hmTDTl don’t forget to share the Clinician’s Guide with your providers!

Our research shows that most people with Lipedema experience persistent pain, averaging 5/10 daily. During flare-ups, pain rises to 7/10, disrupting sleep and activities. Sadly, only 4% of participants report being pain-free on a typical day. These insights are part of our First Look Report, which offers a deeper understanding of Lipedema and its impact. Discover more: https://bit.ly/41liRJk

For the first time, the American Board of Obesity Medicine (ABOM) has officially included Lipedema in its board certification exam for Obesity Medicine. Physicians pursuing certification will now be assessed on their understanding of Lipedema, covering key areas like risk factors, clinical findings, and diagnostic criteria. This development is a significant step forward in ensuring that more clinicians recognize and understand Lipedema, alongside other adipose tissue disorders. The Lipedema Foundation recognizes this milestone that energizes us even more in our mission to raise awareness, support research, and provide essential resources for patients and healthcare professionals alike. We applaud this important achievement for the community! Learn more about ABOM and the new exam content here: https://www.abom.org//

A new meta-analysis on PubMed offers insights into the safety and effectiveness of liposuction techniques for Lipedema. It reviewed 10 studies involving 906 patients across 2,542 procedures, with follow-up from 6 to 37 months. Methods compared include tumescent (TTL), power-assisted (PAL), and water-assisted (WAL) liposuction. All techniques reduced pain, swelling, bruising, and tension. The overall complication rate was relatively low, although marginally higher than commonly reported complication rates for general liposuction (4.1% vs. < 1%). Limitations: - Small number of studies - Inconsistent reporting - Mostly retrospective, single-site studies Despite limitations, the study concludes that TTL, PAL, and WAL improve symptoms with relatively low risk. Read more: bit.ly/3NKuq7T

Our photo stories offer an in-depth look at Lipedema through images, capturing its diverse presentations across individuals, body regions, and stages. With a library of over 500 photos and growing, we’re committed to advancing awareness, education, and representation. Clinicians frequently tell us that our high-quality photos are vital for understanding the disease. We are grateful to our community members with Lipedema for their impactful participation and contributions. View the updated library here: https://lnkd.in/e_FP_FvC

The Lipedema Foundation is participating in ObesityWeek 2024, hosted by The Obesity Society, from Nov 3-6 in San Antonio, TX. Our team—Jonathan Kartt, Dr. Laura Harmaceck, and Dr. Ashok Srinivasan—will engage with researchers and professionals throughout the conference. Lipedema Foundation is presenting a poster session, “The Lipedema Research Roadmap: Updates and Future Directions,” which will provide insights into the latest advancements in Lipedema research and our plans for the future! The team is looking forward to building connections and advancing Lipedema research! https://obesityweek.org/