Chief Operations Officer

Job Description

Design and execute LF’s strategy to define the lipedema research space. LF is a private grant-making 501c3/509a that funds high risk, high reward scientific and clinical research (venture philanthropy) dedicated to the diagnosis and treatment of lipedema. Lipedema is a female condition where irregular fat builds up in the arms and legs, sometimes with pain and swelling. It is widespread but unheard of.

 

Duties and Responsibilities

The COO will work closely with the Executive Director and the team to design and execute LF’s strategy:

-       Grow awareness among multiple stakeholder groups: researchers, surgeons, doctors, therapists, general public

-       Build network of collaborative scientific investigators, clinicians and educators; build out boards

-       Lay groundwork for future complex, large-scale research projects

-       Source ad hoc venture capital projects

-       Enhance the lipedema research space: cultivate interest, lower barriers to entry, and accelerate efficiency

 

Requirements and Qualifications

Ideal candidates will have experience and proven track record in

-       Disease-focused private foundations or public non-profits, or related space 

-       Startups

-       Executive-level strategic planning and execution

-       Team building and personnel management; outsourcing

-       Software, data and technology

-       Breadth and depth of managing day-to-day work across all functions

-       Scientific proposal review, grant assessment, & contract negotiation

-       Securing Personal Health Information (PHI/PII)

-       Marketing

Education

-       PhD or advanced degree in biology, chemistry, bioengineering or related field, and

-       MBA or MPH

Characteristics

-       Excels in big-picture strategy and the details to implement it

-       Comfortable representing the foundation publicly

-       Transition seamlessly between various colleagues: scientists, patients, physicians, staff, and outsourced teams

-       Be transparent and collaborative

-       Ability to travel ~25%

 

About Lipedema

Lipedema is a female condition where irregular fat builds up in the arms and legs, sometimes with swelling and pain. It can be mistaken for obesity or lymphedema. It is widespread, but research and treatments are lacking due to limited awareness and because there is no diagnostic test. Adolescent and adult women are affected. Key awareness statistics show large growth in recent years, such as 200+ social media groups and pages and the YouTube channel made by LF founder having 250,000 views. There is a negative impact on quality of life due to physical pain, loss of mobility, and confusion with obesity. Currently there is no diagnostic test (gene, imaging, blood or other biomarker) but “we know it when we see it”. Initial small-scale research is interesting and deserves to be investigated further (see links at www.lipedema.org/about-lipedema):

-       Early-stage lipedema may be protective against diabetes, high cholesterol and high blood pressure

-       Tissue sodium content may be elevated

-       Stem cells may not differentiate well

-       Lipedema tissue can be imaged

 

About LF

We have funded 24 grants with a variety in institutions, locales, and PI experience level. We intentionally seek truly collaborative researchers because of the early stage of research. LF maintains its focus by outsourcing non-core functions (marketing/SEO, legal, accounting, IT, software) and having an intentionally narrow scope. Current management is the Executive Director & Founder in CT, and the Chief Science Officer in MD, with a support staff of 3. We have offices in Greenwich, CT, near Bethesda, MD, and we have office space available in New York, NY. This is a full-time position. We offer benefits and flexibility.

Our 2018-2019 initiatives include

-       Pilot of complex research program

-       Host scientific retreat

-       Launch patient registry

-       Develop awareness campaign

-       Assess data from and collaborate with 24 funded projects

-       Utilize retreat outcomes and project data to refine a research roadmap; implement it

What we don’t do

-       Fundraising for the next ~2-5 years (we are privately funded)

-       Extensive advocacy work, direct patient support, patient counseling or fund treatments for individuals

-       Fund research specifically around obesity, lymphedema, Dercum’s or liposuction

-       Lobbying, politics or work with payors

 

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