Intro | 2020 Year in Review

by Guy S Eakin, PhD

2020 will surely inspire many attempts to capture the year in review. In a year that required so much of our attention, it could certainly be forgiven if you missed some of the encouraging advances in the world of Lipedema research.

It was no easy feat for a research community distracted by the same things that distracted us all. 2020 required us all to become experts in many areas. We learned epidemiology from a global pandemic. We even learned a thing or two about murder hornets and making our own masks.

But if you were watching Lipedema research this year, there was much to learn, and many reasons to get excited for where research is taking us.

Over the US Thanksgiving holiday, the Lipedema Foundation staff put our heads together and counted down the top ten research observations we feel signal hope for the women living with this poorly known, and vastly understudied, condition.

The Lipedema Foundation Registry Has Launched!

by Erik Lontok

At the outset of our Lipedema project, a patient registry had long been considered a Foundation priority. As we launched our first grant cycle in 2017; laid the groundwork for the now robust LF research network; and built and maintained relationships across the Lipedema clinical, patient advocacy, and research diaspora - we always kept in mind how best to design, implement, and execute the community’s shared desires for a Lipedema patient registry.

After an arduous 2018, and a hectic 2019, it is our pleasure to announce that Lipedema Foundation Registry (LFR) has launched! We could not have accomplished this without the the help of intrepid explorers like Joanna Dudek (SWPS U.), Tilly Smidt, Sharie Fetzer (Lipoedema UK), Karen Herbst (U.Arizona), as well as Rachelle Crescenzi and Paula Donahue (Vanderbilt U.), alongside the technical and survey expertise of REDCap Cloud and RTI International, and of course the countless testing hours volunteered by family, friends, and patients.

So the picture below is for all of those whom have helped make this possible - a gracious thank you and cheers to all of you!

LF South (Maryland Office) members celebrating the LFR launch. From left to right, Stephanie Peterson/Registry Guru, Erik Lontok/Bystander Scientist, Leanna Frye/Comms Aficionado.

LF South (Maryland Office) members celebrating the LFR launch. From left to right, Stephanie Peterson/Registry Guru, Erik Lontok/Bystander Scientist, Leanna Frye/Comms Aficionado.

Launched, Active, and Recruiting!

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.

"A rising tide lifts all boats": Lymphatic Impact Researchers

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.

“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…