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.

Press release about our work

Where

Web: www.lipedema.org

Facebook: Facebook.com/Lipedema

Twitter: @LipedemaFndn

Videos on YouTube: http://bit.ly/2meYRF4

Photos on Smugmug: fatdisorders.smugmug.com

Office: Greenwich, CT

When

Lipedema Foundation was formed in August 2015, although we have been helping the lipedema community since 2013. 

Why

To change the world, man.

Who

 

Felicitie Daftuar, Founder and Executive Director

Felicitie is Founder and Executive Director of the Lipedema Foundation, a US not-for-profit founded in 2015 that is funding multiple basic and translational research projects at multiple top-tier universities and hospitals in order to define, diagnose and treat Lipedema and related conditions such as Dercum’s Disease. Felicitie is the past President of the Fat Disorders Research Society (FDRS) from 2013-2015, and drove its resurrection.
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 program/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 3 girls (ages 7, 5 and 3) with keeping the lipedema fatigue in check.

 

Erik Lontok, Chief Science Officer

Erik is the Chief Science Officer of the Lipedema Foundation, joining the team in 2017. He most recently served as a Senior Associate at the Milken Institute's Center for Strategic Philanthropy, helping foundations and philanthropists identify transformative research investments in leukemia, inflammatory bowel disease, lipedema, and academic research institutions. Erik previously served as a Senior Research Associate for the Forum for Collaborative HIV Research with a regulatory science portfolio spanning viral next generation sequencing, drug and diagnostics development, as well as clinical trial management. He also previously held an adjunct professorship in the Department of Chemistry and Biochemistry at the University of Maryland, College Park, and interned at the AACR Science Policy and Government Relations Office. In January 2011, Erik graduated with a PhD in Biochemistry from the University of California, San Francisco and worked as the animation and scientific content researcher for the Methods in eLearning for Translational Science web portal. He cooks and chills in Maryland with his wonderful wife and two boisterous kiddos.

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Leanna Frye, Program Associate

Leanna is the Program Associate for the Lipedema Foundation, joining the team in 2018. She most recently served as the Communications and Fundraising Associate at Evidence Action, an international development nonprofit that aims to scale up cost-effective programs. Leanna’s interest in working where public health intersects with science drew her to the Lipedema Foundation and she is excited to be a part of the team. Leanna received her Bachelor of Arts in Anthropology from Oberlin College in 2013. She lives in Maryland with her cat, who she is unfortunately allergic to, yet still loves dearly.

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Caitlin Drap, Operations Manager

Caitlin is the Operations Manager at the Lipedema Foundation, joining the team in 2018.  Caitlin began her career working in the litigation technology field for various law firms in New York City and DC.  She established a strong knowledge of technology products and implemented numerous database systems to keep her firm ahead of the always changing technology landscape and in accordance with federal laws on Electronically Stored Information and E-Discovery.  In 2012, Caitlin moved to Chelsea Piers to explore her true passion for sports, health and nutrition.  At Chelsea Piers, she worked closely with the Executive Director to improve their internal technology resources and streamline their operational procedures.  In addition, Caitlin served as a triathlon coach for both adults and children and was instrumental in setting up the Chelsea Piers Connecticut triathlon program.  Caitlin has always been passionate about women’s health issues, and she brings a strong background in database technology and a wealth of experience in health and fitness to the foundation.  She earned a Bachelor of Arts from Eastern Connecticut and holds several certifications in health, wellness and fitness. 

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Stephanie Peterson, Data Manager

Stephanie Peterson is the Data Manager for the Lipedema Foundation, joining 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.   

 

Danielle Wildstein, VP Communications

Danielle began her career working as a management consultant for Accenture in the pharmaceutical industry. There she was involved in projects spanning various business areas and had a particular interest in research, drug development and clinical trials. She has always been passionate about medicine, specifically as it relates to women's health. Danielle received her BA in Psychology from Lehigh University in 1998 and M.S. in Organizational Psychology from Fordham University in 2002. She lives in NJ with her husband and two young children.