In the News

ESMO 2022 Congress

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EHE champions were on the global stage on September 9th, at the ESMO2022 Congress in Paris, France. ESMO, the European Society of Medical Oncology, is a leading professional organization for medical oncology education and information. Dr. Silvia Stacchiotti, a leading EHE clinical expert (Italy), and Hugh Leonard, Chair of Trustees of the EHE Rare Cancer Charity (UK), spoke in a session entitled Ultra-rare sarcoma: Navigating an endless sea. Dr. Stacchiotti discussed the drugs and research needed to better treat ultra-rare sarcomas, and Hugh eloquently presented the importance of collaboration and partnership among patients, advocates, researchers, doctors, government, and pharma in the effort to find effective treatments for EHE as an ultra-rare cancer.

Denise Robinson, Director of Research for the EHE Foundation, and Jane Gutkovich both attended ESMO virtually. Denise commented, “Hugh has placed EHE patients and advocates on one of the world’s largest oncology stages and clearly points out that collaboration with patients, and EHE research facilitated by patients is essential to finding treatments and cures for EHE.”

Planned Ikena Oncology Clinical Trial to Include EHE Patients

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The planned Phase 1 clinical trial includes patients with tumor types with a high frequency of Hippo pathway alterations, including NF2-deficient malignant mesothelioma and some soft tissue sarcomas with YAP/TAZ genetic fusions, including Epithelioid Hemangioendothelioma (EHE), a rare form of soft tissue sarcoma that has a significant unmet medical need with no currently approved therapy for advanced or metastatic disease. As supported by preclinical work, Ikena also plans to explore combinations of IK-930 with other targeted agents for the treatment of solid tumors, such as EGFR-mutant non-small cell lung cancer (NSCLC) and KRAS-mutant solid tumors.

Click here to read the full press release.

The Importance of Biobanking

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Biobanking is a brand-new endeavor for us at The EHE Foundation. Researchers retain frozen and stored tissue and biological samples from surgeries, which usually remains within the institution where the procedure takes place. Today, biobanking is a game-changer for rare disease and patient-led organizations like ours. Biobanks accelerate research by safe-guarding high-quality, donated tissue samples from patients in a secure location (a biorepository) and strategically providing that tissue as a resource to the whole research community, not just within one institution. 

In early 2021, The EHE Foundation jumped into these uncharted waters and launched a landmark research study project: the EHE Biobank. Patty Cogswell joined us as our EHE Coordinator. As the founder of Rare Biorepository Consulting, LLC, she has garnered over 35 years in cancer research and brought valuable experience and expertise to this project. Patty is involved in all aspects of the operations of the biobank, from protocol, patient consent and process development, to coordination of tissue collection with patients, hospitals, and the biorepository. Patty also works closely with our Foundation’s research team and Medical Advisory Board to ensure donated tissue samples ultimately get into the hands of key EHE researchers. 

Patty recently shared some exciting news: “I have been amazed by the response to our biobank! In just three months of the biobank being active, we have already

  • talked with over 20 EHE patients interested in tissue donation
  • collected 4 specimens from EHE patients

Patty went on to explain, “To put this in perspective, prior to the Biobank launch in 2021 the Foundation’s efforts to get EHE tissue for one specific research project resulted in 8 donations from patients. So, this year we are off to a tremendous start! Thank you to the EHE patient community for your valuable contributions and support of the Biobank!”

The EHE Biobank also helps strengthen our ability to provide donated tissue to further EHE cell line development being conducted through our partnership with the Broad Institute’s Rare Cancer Dependency Map Initiative. Cell lines are the main model to study cancer behavior and response to various drug therapies. 

You can learn much more about tissue donation and biobanking by visiting the EHE Biobank page on our website. If you have been diagnosed with EHE and have an upcoming surgery or procedure scheduled, please contact Patty to learn how you can participate in tissue donation. 

Researchers Engineer Much-Needed Mouse Model of a Rare Vascular Sarcoma

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Dr. Rubin used a novel approach to target the gene fusion that causes epithelioid hemgioendothelioma, engineering a novel, first-of-its-kind mouse model of the disease, which will help advance studies to identify new treatments.

Click here to read the full article.

Sharing exciting news highlighting Dr. Brian Rubin’s research at the Lerner Research Institute at Cleveland Clinic! Dr. Rubin shared his thoughts on his success with us directly as well: “This is real progress and we continue to make substantial progress with our mouse model. It’s a very exciting time for EHE research as we see a lot of things we have been working on over the last several years starting to get results.”

Leah Heinrich Participates on Scientific Peer Review Panel

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For Immediate Press Release: 

SCIENTIFIC PEER REVIEW OF CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS’ RARE CANCERS RESEARCH PROGRAM FOR THE DEPARTMENT OF DEFENSE

The Congressionally Directed Medical Research Programs’ (CDMRP), Rare Cancers Research Program (RCRP) consumer advocate Leah Heinrich recently participated in the evaluation of research applications submitted to the RCRP. Leahwas nominated for participation in the program by The EHE Foundation, Hobart, WI.  As a consumer reviewer, she was a full voting member, (along with prominent scientists) at meetings to help determine how the $7.5 million appropriated by Congress for Fiscal Year 2020 will be spent on RCRP research. 

Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Leahsaid that, “It is an honor to be apart of such an important program and represent the rare cancer patient voice. It’s exciting and humbling to see brilliant minds at work developing innovative ideas that could one day make a huge difference in the lives of rare cancer patients”.

The U.S. Congress established the Rare Cancers Research Program in the FY20 Department of Defense appropriation. With this new program, consumer advocates and scientists work together in this unique partnership to evaluate the scientific merit of research applications. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs.  Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted.  We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said.

Scientists applying propose to greatly improve outcomes for people with rare cancers through discovery, community building, and expansion of knowledge across the cancer landscape. The RCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking research while encouraging out-of-the-box thinking.

More information about the CDMRP’s RCRP is available at the website: https://cdmrp.army.mil/rcrp/default .

Media Contact:
Kate Poindexter
Public Affairs Specialist
Ripple Effect
Supporting the Congressionally Directed Medical Research Programs,
USAMRDC
301-619-7783
[email protected]

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