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2023 Histiocytosis Association Research Grant Recipients

Since 1992, because of your generosity and dedication, the Histiocytosis Association has granted over $7.5 million for research projects in 14 countries – that’s 211 projects, 7 clinical trials and 1 international database. This year, the Histiocytosis Association awarded 4 new seed grants. Here to dive into the Histiocytosis Research Grant Program is Kathy Wisniewski, the Secretariat for the Histiocytosis Association and our main link to the Histiocyte Society.

One of my roles at the Histiocytosis Association is Research Grant Program Administrator, which means that I oversee the entire process from beginning to end and help keep everything moving along. From opening the portal for accepting applications all the way to the fun job of notifying grant awardees, it’s an intricate process that spans about 7 months. Typically, we open the application process in mid-May and it remains open until the beginning of July, at which point we compile all of the applications and send them to the Scientific Committee of the Histiocyte Society for the first round of review.

This group of dedicated physicians painstakingly look at every application and score them each based on scientific impact, feasibility, relevance to histiocytic disorders and overall impact. They also offer helpful comments on the project, given to the applicants at the end of the cycle. Once the Scientific Committee completes their review, it is my job to calculate the overall scores and put them in order of their ranking. These are then sent back to the Scientific Committee for review and discussion, which takes place via email to start and then during a dedicated meeting set aside at the Histiocyte Society Annual Meeting for the committee to discuss any changes.

After they finalize their rankings, they send their recommendations to the Scientific Committee of the Histiocytosis Association and make the final decision of how many projects are funded and which projects will be awarded. Then I have the privilege, along with Deanna, of notifying the grant recipients of their award and we also notify all other applicants as well. The final step is to get all the paperwork generated and signed and then sending out the awards.  

Additionally, we work with past participants to collect layperson reports at the end of their one-year grant and post the reports on our website for the community to see the impact that you have been able to make with your generous donations and fundraising efforts. 

The Association is pleased to share with you our most recent recipients of Research Grant funding, totaling over $200,000 in direct research funding. This year’s projects reflect research into HLH, LCH and Rosai-Dorfman Disease. 

In addition to the 4 seed grants, we are thrilled to support an additional project focused on adult HLH, made possible by a member of the community. Earlier this year, we also continued our support of LCH-IV that has been an ongoing worldwide clinical trial. We will cover more on those at the end of this post. 

2023 Annual Seed Grants 

Below are the summaries of the 4 seed grants through our Annual Research Program as well as the summary of the additional projects, organized by the main disorder being researched and capped off with a quote from the research team about the intended outcomes. 

Langerhans cell Histiocytosis(LCH) Grant

Dr. Nicole Coufal

This first project is led by principal investigator (lead researcher) Nicole Coufal of University of California, San Diego. The project is entitled: “Heterogeneity in Histiocytosis associated Neurodegeneration using iPSC models.” The project studies neurodegeneration, one of the least understood, least treatable and most often seen long-term problems for those diagnosed with LCH.  

In this project they study how neurodegeneration is caused in the cells, using mouse models, when interacting with healthy brain cells. 

“The overall goal of the proposal is to ultimately identify additional targets for LCH therapy with a goal of improving therapies for neurodegenerative LCH.”  

Dr. Nicole Coufal

To read more about the grant, click here. 

Rosai Dorfman Disease (RDD) Grant

Dr. Ruthy Shiloh and Dr. Sarah Elitzur

This project is led by two principal investigators, Ruthy Shiloh and Sarah Elitzur from the Schneider Children’s Medical Center in Petach Tikva, Israel. This project, “H Syndrome as a Model for Rare Histiocytoses,” and it focuses on key hereditary mutations that can trigger the genes that cause certain forms of Rosai-Dorfman Disease (RDD). 

“This would significantly improve treatment options for these patients and contribute to our understanding of how histiocytosis develops and the treatment of rare histiocytoses.”

Dr. Ruthy Shiloh  

To read more about the grant, click here. 

Hemophagocytic Lymphohistiocytosis (HLH) Grants

Dr. Polina Shindiapina

This first of two HLH-centered projects is led by principal investigator Polina Shindiapina a researcher based out The Ohio State University. Her project, entitled: “Evaluation of protein arginine methyltransferase 5 (PRMT5) as an actionable target in hemophagocytic lymphohistiocytosis (HLH)” will study the function of a protein that is active in white blood cells, which can cause HLH to develop, and if targeting them through a form of chemo can slow down or stop HLH in someone’s body.  

“The data acquired in the experiments described in this proposal will lead us to perform clinical trials of drugs that block PRMT5 and may therefore treat human patients with HLH.”  

Dr. Polina Shindiapina

To read more about the grant, click here

Dr. Randy Cron

The second HLH focused project is led by Randy Cron from the University of Alabama Birmingham. His project entitled “DOCK Genes: Novel Risk Alleles for Cytokine Storm Syndrome” delves into two types of DOCK gene mutations and how they are linked to Cytokine Storms occurring in the body as part of HLH or Macrophage Activation Syndrome(MAS). They are hoping to defend the assertion that those genes be included in future gene sequencing for individuals with secondary HLH or MAS. 

“A better understanding of the number of individuals with genetic risk factors for sHLH/MAS, as well as knowledge of how these mutations contribute to this histiocytic disease, will help identify individuals at risk and tailor appropriate therapy to those who develop sHLH/MAS.” 

Dr. Randy Cron

To read more about the grant, click here

Additional Projects 

In addition to the grants mentioned above, we have also funded two other grants. 

LCH-IV Database Continuing Grant 

Dr. Milen Minkov

The first is a renewal and updating of the LCH-IV Database as the trial, which has been ongoing for a number of years, is nearing completion. The LCH-IV database is managed by Milen Minkov through his institution, the Children’s Cancer Research Institute (CCRI). The LCH-IV Treatment Protocol Study (LCH-IVTPS) is an ambitious research clinical trial aiming to address unsolved clinical issues of primary importance for the patients (e.g. treatment of patients failing established standard treatment; treatment of patients with disease relapse; treatment of LCH of the brain).

This grant aims to cover some yearly maintenance of their Database and IT system for the next several years. The LCH-IV trial was originally funded in 2015 through our Annual Grant Program.. LCH-IV is a build on the LCH-I, II, and III clinical trials which were developed prior to the 2000s to find the best course of treatment for LCH around the world. 
We are glad to have supported this important project for a long time and are glad to see it through to completion.

$10,000 HLH Grant 

Dr. Adi Zoref-Lorenz

A member of the community provided the Association with a grant to support research for adults impacted by HLH. Dr. Adi Lorenz-Zoref had a project focused on this topic that was near completion and was interested in Uplifting Athletes research grant, which provided early career investigators with $10,000 to support a project if the community matched the amount. We applied for this opportunity together through the support of this individual from our community, and while our grant was not selected, the Association committed to supporting Dr. Zoref-Lorenz’s work on HLH. 

Dr. Zoref-Lorenz’s project is titled “Validating Novel Markers for diagnosis and prognostication in adult malignancy-associated hemophagocytic lymphohistiocytosis (HLH)” it studies hematologic malignancies (HM-HLH), a subset of HLH which is often misunderstood. It will often be treated like other forms of HLH, and patients only have a 5-year survival rate of 10-20%. The study aims to bridge the knowledge gap and link its relationship to other forms of HLH, while exploring prognosis and treatments unique to HM-HLH. 

“However, to establish our work as foundational for understanding HM-HLH, we need to do extensive validation work. This study will validate these findings.” 

Dr. Adi Zoref-Lorenz

View our interview with Dr. Zoref-Lorenz to learn more about the impact and importance of this study!

If you’d like to learn more about our Funding Cycle and Annual Research Program, you can visit or listen to our dedicated podcast episode, here.