About The Foundation
What
Mission: To Define, Diagnose and Develop Treatments for Lipedema
Strategy: The Lipedema Foundation supports collaborative research that addresses the basic biology, genetics, and epidemiology of Lipedema
Values:
Transparency – the Foundation strives for an open and active discussion with and amongst grantees
Collaboration – the Foundation stresses the importance of collaborative research
Community – the Foundation favors research efforts that will build and leverage a patient-researcher community
Lipedema Foundation is a US 501c3 non-profit and 509a private family foundation.
Where
Web: www.lipedema.org
Facebook: Facebook.com/Lipedema
Twitter: @LipedemaFndn
Instagram: lipedema_fndn
Photos on Smugmug: lipedema.smugmug.com
LinkedIn: www.linkedin.com/company/lipedema-foundation
Office: New York, NY
When
Lipedema Foundation was formed in August 2015, although we have been helping the Lipedema community since 2013.
Who
Felicitie Daftuar, MBA - Founder
Felicitie is Founder and Executive Director of the Lipedema Foundation, a US not-for-profit founded in 2015 that has awarded $12m to 58 clinical, translational and basic science projects. Felicitie is the past President of a Lipedema patient support group, the Fat Disorders Research Society (FDRS, www.fatdisorders.org) from 2013-2015, and drove its resurrection. She launched its YouTube channel with over 1.2m video views, its extensive mail list and Facebook pages, and helped establish annual conferences.
She received her MBA from The University of Chicago Booth Graduate School of Business in 2009. Prior to getting her MBA, she worked as a software engineer and large project / program manager including a short-term assignment in Krakow, Poland. Her undergraduate degree is a BS in Computer Science from the University of Arizona in 2000.
Felicitie had Lipedema symptoms occur at 4 weeks postpartum after her second child was born and has successfully managed the Lipedema symptoms through only nutritious eating, exercise, caffeine and natural hormonal fluctuations. She credits nutritious eating, Pilates, and her three girls with keeping the Lipedema fatigue in check.
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Jonathan Kartt - Chief Executive Officer
Jonathan is Chief Executive Officer of the Lipedema Foundation. He brings to the role nearly two decades of leadership and cross-functional experience in philanthropy and the social sector, and a background advising life sciences companies, nonprofits, and foundations on strategy, operations, and management.
Jonathan brings a passion for engaging with patients and the scientific community to grow our understanding of Lipedema, increase awareness, and create possibilities for new diagnostics and treatments.
Before joining the Foundation in 2021, Jonathan led basic biomedical research, chronic pain, and civic engagement programs at the Rita Allen Foundation, a private foundation working at the intersection of science and civic engagement. Previously, at Strategic Decisions Group and the Bridgespan Group, he worked to advise leading organizations as a strategy consultant in the life sciences and social sectors. He serves on the Board of Directors of the Magnum Photography Foundation, and studied at Dartmouth College and the Johns Hopkins School of Advanced International Studies (SAIS) in Bologna, Italy and Washington, D.C.
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Ashok Srinivasan - Chief Science Officer
Ashok is the Chief Science Officer of the Lipedema Foundation. He brings to the role over three decades of research, operations, and executive experience in academic, federal, 501(c)(3) non-profit, and for-profit environments, with a deep commitment to human disease research. An innovative, patient-oriented scientist, Ashok has an extensive history of leadership in basic science, translational/pre-clinical research, and early-phase clinical trials.
Before joining the Foundation in 2023, Ashok was the Chief Scientific Officer of the Autism Impact Fund, a venture capital fund targeting autism, neurodevelopmental disorders, mental health, and associated complex chronic conditions. At AIF, Ashok developed the scientific rationale for the investment thesis. He provided scientific due diligence and expert advisory, leading to investment in eleven companies across biotech, therapeutic intervention, and digital, tech-enabled services.
Educated at the University of Madras, India, and the University of Cambridge, England, Ashok holds a Ph.D. in Molecular Biology from the University of Pittsburgh. He was a research fellow at the Massachusetts General Hospital/Harvard Medical School, a staff scientist at the NIH, and held faculty positions at the University of Pittsburgh. As the Translational Research Scientist for NSABP Foundation/NRG Pittsburgh, Ashok served as a molecular genetics/genomics expert in developing scientific rationales for 10+ clinical trials supporting therapeutic advancements for breast and colorectal cancer. His technical expertise extends across molecular biology, genetics, virology, genomics, genome sequencing, and computational analyses applied to model organisms and humans.
At the Lipedema Foundation, Ashok seeks to translate notions of precision medicine from oncology, where it is most advanced, to lipedema, which currently lacks biomarkers, model systems, and a unifying framework that would provide a point of entry for research aimed at scientific understanding that might lead to effective therapeutics.
Ashok is a scientific advisor to AIF, non-profit foundations, and an accelerator. He also serves on the Board of Directors of AIF portfolio companies.
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Erin Clark - Project Manager
Erin is the Project Manager for Lipedema Foundation. She was born, raised and currently lives in Chicago and earned her Bachelor of Arts degree in Spanish and Political Science from Illinois State University. She previously worked for a bootstrapped financial technology startup where she helped to build operations, processes, and culture from scratch, and is excited to bring those skills and experiences to help the Lipedema Foundation advance its mission.
A lifelong learner and chronic disease patient, Erin is thrilled to join the philanthropy and women’s health research fields. Outside of work, Erin loves to travel, volunteer, and watch her 2.5 year old son experience the world.
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Stephanie Galia, MPH - Associate Director, Special Projects
Stephanie Galia is the Special Projects Manager for the Lipedema Foundation. She comes to the Foundation with over a decade of public health leadership experience gained in a higher education setting and work experience as a Clinical Project Manager. Stephanie received her Master of Public Health in Health Promotion & Behavioral Science from San Diego State in 2011. She cares deeply about patient-centered work and supporting individuals and communities to achieve values-aligned wellness.
As a chronic disease patient herself, Stephanie is passionate about supporting Lipedema research progress and playing a part in finding answers for Lipedema patients.
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Laura Harmacek, PhD - Program Officer for Scientific Programs
Dr. Laura Harmacek is the Program Officer for Scientific Programs. She comes to the Lipedema Foundation with over 15 years of molecular biology experience and 9 years project management experience. She is passionate about scientific communication and skilled at scientific collaborations. Laura is excited about disease research and bringing her collaborative nature to the Lipedema Foundation. Her experiences range from biomarker discovery to clinical trials management. She earned her PhD in Molecular Biology from the University of Colorado Anschutz Medical Campus and continued to National Jewish Health researching climate, epigenetics, and the interaction with the immune system. She resides in Colorado and enjoys opera and spending time with her family.
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Courtney Mascio, OT/L, CLT - Professional Education Manager
Courtney Mascio is the Professional Education Manager for the Lipedema Foundation. After receiving her B.S. in Exercise Science from Appalachian State University in 2010, she went on to receive her M.S. in Occupational Therapy from the University of St. Augustine for Health Sciences in 2014. Shortly after graduating from OT school, Courtney completed the required course to become a Certified Lymphedema Therapist. Since then, she has been passionate about serving the Lipedema community through advancing advocacy and creating better awareness surrounding the disease.
Courtney currently lives in North Carolina and enjoys spending time with family and friends, playing with her basset hounds, cooking new recipes, and getting back up to Boone for ASU football games.
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Kiara Hines - Administrative Assistant
Kiara Hines is the administrative assistant at The Lipedema Foundation. Originally from North Carolina, Kiara moved to New York City in 2021 for a change of pace. She has worked in healthcare administration for the past 5 years, formally working in the mental health sector. Kiara is deeply passionate about all things physical and mental health.
Kiara has a Bachelors in Fine Arts from East Carolina University. When not at the office you can find Kiara eating yummy foods, belly-laughing with friends, and living in an abundance of gratitude for this beautiful life she has been blessed with.
Stephanie Peterson - Data Manager
Stephanie Peterson is the Data Manager for the Lipedema Foundation, having joined the team in 2018. Her love of numbers and databases led her to work for the Office of Management and Budget for the City of New York as an analyst and for a national homebuilder managing their database and contracts. She received her M.A. in Quantitative Methods in the Social Sciences at Columbia University in 2002. She is excited to work with the Lipedema Foundation team and use her skill set to facilitate the foundation’s grant management. She lives in Virginia and loves playing European board games with family and friends.
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Jaime Soderberg - Operations Manager
Jaime is the Office Manager for the Lipedema Foundation. Before joining the LF team in 2021, Jaime's professional experiences include working in Healthcare in a high volume Emergency Department and Higher Education in both Disability Services and Institutional Advancement.
Jaime received her B.A. in Psychology from Southern Connecticut State University. In 2002, she initiated the first thyroid cancer support group in the State of Connecticut. Also living with Lipedema, Jaime is passionate about health issues and responsible awareness.
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