About Us

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 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 www.fatdisorders.org) from 2013-2015, and drove its resurrection.
She received her MBA from The University of Chicago Booth Graduate School of Business in 2009, after many years of software engineering and program management. 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 Pilates and her 3 girls (ages 6, 4 and 2) 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.

 

Danielle Wildstein, VP Operations

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.

 

Shannon Seeberg, VP Communications

Shannon received her BA in Communications from Hofstra University in Hempstead, NY in 1998. She began her career in the Entertainment business as an administrative assistant for Howard Stern and The Howard Stern Show and later as the Personal Assistant to actress Amy Irving and director Bruno Barreto. Shannon then became the Executive Assistant to both Jennifer Lopez and Marc Anthony where she remained for many years until shifting her focus to the Financial Sector. For nearly 10 years she served as the Executive Assistant to the CEO of CLEAR and Arience Capital, where she helped grow the business to $1.5B in assets under management. Since becoming a mom, she now primarily focuses her time on consulting and freelance work supporting families, individuals and companies with their day-to-day organization and management. Shannon, a Long Island native, now resides in Connecticut with her husband and 2 small children.