“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: 

  • 40 LOI’s reviewed – Submitted letters of intent (LOI) were reviewed based on the strength of the hypothesis along with specific aims, research methods, and relevance of the proposed work to lipedema. Scientific merit was assessed through the relevance and feasibility of the work, as well as the applicant’s research tools, experience, and collaborative history.
  • 28 researchers interviewed – Meritorious applicants were interviewed via videoconference and Powerpoint, wherein their proposal, research experience, interest in lipedema, relevant tools for the field, and collaborative potential were discussed. A key interview topic involved modification of the scope of the submitted LOI, either through learning about the types of collaborations that would enhance their work, or encouraging a focus on utilizing patient samples as the project’s model system.
  • 22 applications invited – Submitted full applications included a greater expansion of specific aims, proposed alternate research approaches, defined project milestones, and a detailed budget. Application criteria included:
    • Will this work define lipedema pathophysiology or advance our understanding of disease etiology?
    • Might the work lead to the development of a diagnostic tool?
    • Are the proposed methodology, study design and controls, clear and relevant to the project’s hypothesis?
    • Does the project establish the dataset needed for externally funded applications?
  • 16 projects awarded - The final decision point was assessment of the collaborative potential of the researcher and their proposed work. This was the most subjective component of our review process, but has now led to:
    • A collaboration is under development with all three of our genetics-focused projects.
    • Two co-located teams of surgeons and researchers.
    • Initiation of a sample-sharing agreement with a clinical project and a diagnostic tool researcher.
    • Eight additional collaborations.

Apart from refining the process itself, we also learned and collected data points about applicant scoring, such as:

  • Applicants that could not succinctly state their hypothesis, or that struggled to articulate the relevance of their work to the challenges facing lipedema typically rated poorly.
  • A feasible project plan with lofty, but achievable research goals scored well.
  • Beyond scientific merit, the best applications involved researchers proposing and willing to participate in collaborations.

Allow me to end this blog with my PI’s most common response after showing them research data, “well that answers that – and now here are all the questions the answer raises. Get to it.”

And as we move into 2018, these are the questions we will be asking ourselves about our research program:

  • How might we best foster productive collaborations?
  • How do we balance the scientific freedom researchers need to succeed, with the goals and milestones put forth in applications?
  • How can the foundation facilitate discussions about unpublished, preliminary work whilst protecting a grantee’s research and intellectual property?
  • How might our current grantees and work engage equally talented and driven researchers into thinking about lipedema?

We will be sure to keep you posted as more data is generated. In the meantime, don’t hesitate to reach out with any questions, and thank you for your continued interest and support.

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.

Given that this was the Foundation’s first formal grant cycle, we were impressed by the volume and caliber of submissions received.  A total of 37 research applicants, representing a broad range of scientific disciplines and institutions worldwide, submitted Letters of Intent (LOI). After carefully reviewing each LOI and conducting follow-up interviews, we extended 20 invitations to submit a Full Application, of which 13 were ultimately awarded milestone-driven research grants ranging from 1-3 years.

A clear trend amongst the awarded projects was the active engagement of individuals with lipedema, whether through the development of diagnostic and imaging tools or the utilization of patient samples. Our hope is that by fostering more patient-centered research, we can accelerate the pace of discovery and improve diagnosis and treatment options for lipedema patients.

Overall, we are heartened by the number and quality of the submitted LOIs and full applications, as it reflects our community’s growing demand for better treatments and indicates increasing scientific interest in lipedema. We are excited to partner and support the research of our 2017 grantees, and to continue our engagement with the patient community, as we believe it will take a village to successfully understand and address lipedema.


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.
But I kept coming up short. How could a disease that's seemingly everywhere have so little published? Sure there are some descriptive papers, case reports, and studies with a few patients. There are even literature reviews. But no pathogenesis. No genes. No blood test. No biomarkers. No replicable imaging test. Nada zip zero. I couldn’t find answers to my questions about lipedema.
Why are pain and swelling (which are subjective) recognized criteria of lipedema, but the physical change in the texture of the fat is not?
Why are there only 5 US physicians willing to diagnose lipedema, but there are 12 surgeons willing to operate, 100s of therapists willing to treat, and 2,000 patients participating in Facebook groups?
Do my relatives have it? Are my 3 daughters going to get it? How could it be that I carried 3 children, and my abdomen looks better, but my legs look worse? Is it a disease? A condition? A syndrome? I don't feel sick, but my body is different.
Why can I feel nodules of fat in my legs, but no one can image them with ultrasound, MRI or a highly technical piece of equipment?
Why is it that if I cook healthy meals and exercise the right way, I don't have pain, but if I go on vacation my legs burn when I lay down at night? Do I really need liposuction if my BMI is in the 20s?
Will it get worse? Will it get better? Will it ever go away? How is lipedema different from lymphedema, obesity, lipodystrophy and Dercum’s disease? Is the prevalence really 11% of post-adolescent women? Or 5%? Or 1%? How was I now one of the world's experts in a medical condition?
Along came a small band of heroes. People who had seen this before. People who thought I wasn't crazy for hunting for answers. People who raised the level of discourse around something that had been predominantly patient-led discussions. People who know the ins and outs of the typical disease path from diagnosis to treatment to cure.
The Milken Institute’s Center for Strategic Philanthropy (CSP) opened doors I couldn't. They persevered through setbacks that were tough for me to deal with. They remained objective and focused, diving down deep into many facets of the biology and then resurfacing to put the big picture together.
CSP could talk to researchers and doctors on their level. They could assess which expertise of researchers were needed in order to move forward, and brought 20 different specialties into the conversation. The heroes are so well networked around DC that they could get both the NIDDK and NHLBI represented at our first ever Lipedema Scientific Retreat. They invited me to sit at tables with other people like me.
They kept my expectations grounded and at one point told me: we are at the very beginning of the course of this disease; we know nothing. But they provided a roadmap and tools to move forward, via both this Giving Smarter Guide and an invaluable private report identifying names, tools, and projects. I became we. We went to conferences and called people around the world. We worked together. We wondered together. We opined together. We hosted a meeting convening a global cohort of the best-of-the-best and, and together at the Scientific Retreat, we mapped out the gaps in the field of lipedema research so that we could collaborate and coordinate the research needed to define the space.
We have chosen to strategically address key research challenges of lipedema. For the short term, LF's first priority is the science behind the cause(s) of lipedema. We cannot do meaningful research into lipedema treatments until we understand the scientific cause(s) of the condition. There is a lack of scientific consensus on the most basic elements of this disease, and LF has set about to fix that. We can’t get anywhere until we tackle the fundamentals.
Please, read on and become part of our journey. Take notes and jot down ideas, then call LF. We'll be happy to talk to you about your ideas to move this forward. We have a long road ahead of us and we'd like your company, because it takes a village to move diseases forward. Felicitie Daftuar Founder and Executive Director Lipedema Foundation

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