by Erik Lontok

The Lipedema Foundation is proud to announce the ethics approval and launch of a new Australia-based, multi-institutional collaboration designed to study the genetic and developmental basis of lipoedema! During my recent visit Australia, I was hosted by LF Team Adelaide grantees Chris Hahn, Eric Haan, Natasha Harvey, Kelly Betterman, and Hamish Scott (Figure 1), as well as Neil Piller, Michelle Parsons, and Marielle Esplin (not pictured, but met!). The research study was announced and recruitment began during the 2018 Lipoedema Australia National Conference.

Our discussions focused on the institutional and administrative challenges involved in launching a multi-institutional collaboration. For example, unlike single or multi-institution studies in the U.S. that require only an ethics approval from each organization’s Institutional Review Board (IRB), Australian research institutions require both ethics and governance approval, the latter involving documentation that justifies why the proposed research must occur at that particular institution.

by Erik Lontok

We’ve long believed that advancing lipedema biology would impact the scientific disciplines and fields close to lipedema – in particular, lymphatics research. So, in honor of Lymphedema Awareness Month (March), we would like to highlight a few of the LF grantees whose research efforts will not only improve the way we define and diagnose lipedema, but also advance our overall understanding of the lymphatic system.

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…

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.