“You won’t know until you do the experiment”: Update on the LF 2017 Grant Cycle

by Erik Lontok

This is an inherent truth about research, and the most common response I heard from my principal investigators (PI) all through undergrad and graduate school – that even with the best of hypotheses, you can’t possibly know what the outcome will be until a study has been conducted. As we found out earlier this year, the same is true when funding research. In medical philanthropy, as in science, all you can you can do is plan ahead, think through every possibility, and prepare to be surprised.

During our 2016 grant cycle, a common statement we heard from applicants was: “Would you provide me with more information on how the process works?” Although we did our best provide an overview of the grant submission and review process, we knew that it would be an iterative exercise, tailored to the challenges of building a brand-new field of study around a poorly defined disease.

Now that research is underway, we’ve taken a moment to step back, assess the funding process, and evaluate our learnings. Following is a brief summary of that process, including the key criteria for successful applications…

2017 Lipedema Foundation Funding Cycle and Grantees

by Erik Lontok

Earlier this year, informed by the unmet needs and key research efforts identified by our 2016 Lipedema Scientific Retreat, the Foundation issued a formal request for grant applications aimed at advancing lipedema research and exploring the genetic basis of the disease. We’ve recently concluded our 2017 funding cycle, and are pleased to announce our awarded proposals here.

Philanthropist's Forward

by Felicitie Daftuar

(The following was also used as the forward in the Milken Institute's Giving Smarter Guide for Lipedema.)

I was told to stop having children by the first therapist who confirmed my suspicion of lipedema. I was told to go to Germany, get liposuction and wait 18 months before continuing to have children by an expert. I was told by my amazing GP that the lump of fat and fluid under my knee was postpartum depression, even though I wasn't depressed.

I hired a concierge medicine company to investigate 1) Is lipedema a real thing? 2) Do I have it? 3) What should I do about it? Months later: Yes, Yes, We don't know.

So I did what others before me did. I searched Pubmed and Google Scholar for research papers. I read some of them. I put them in a spreadsheet.

I joined Facebook groups and LinkedIn-ed people I thought would help. I went to patient, researcher, and therapist conferences. I helped resurrect a defunct non-profit, the Fat Disorders Research Society, and the team set up a website and hosted 2 patient conferences (one with 270 attendees!).

In 2015, I narrowed my focus to research, started the Lipedema Foundation (LF), and started funding research projects.

Potential Diagnostic Methods

Diagnosing lipedema is exasperating. On one hand, we know it when we see it but on the other hand, there is no test that a physician can send out for. There are no known genes, no blood tests, and no accepted imaging modalities. Yet.

Some clinicians require pain in order to make the diagnosis.

Some clinicians require swelling in order to make the diagnosis.

Some clinicians require a different texture in the fat in order to make the diagnosis. Although these nodules can be felt by hand, even in early stages, there is no way to 'see' them without cutting into someone.

But the photos of lipedema show the same features:

  • Disproportion between abdomen and limbs

  • Normal feet with an increase of fat at the ankle

  • Fat pad inside below the knee

  • Inner upper thigh hang

  • Fat pad overhanging the knee

  • Lax skin and joints

So we can see it with our eyes. And we can feel it with our hands. But why can't we get a confirmatory test?

We'll get there. In the mean time, please review this and send feedback: diagnoses