The EHE Foundation

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
Kathleen.poindexter.ctr@mail.mil

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Rosemary Kalair

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Rosemary or “Rose” was a compassionate, loving, caring person by nature. She was a nurse for 42 years, and retired in June, 2019. She began her career as a float nurse in the hospital, opened and managed an urgent care, amongst many other departments. She concluded her career as a Cardiac Rehab Nurse. Nursing and caring for people was the passion that drove her.

To get away from the stress that goes with the daily grind, she would take frequent trips to Las Vegas, Nevada to visit her children, Nicholas and Stacy. Her favorite and most joyful trips and were the more than 30 cruises she went on. Loving to be in the sun, relaxed atmosphere and island music made her feel the best.She was extremely active in St Isadore parish from being a Eucharistic Minister to making food for families in need; there was nothing she would say “no” to if it gave her a chance to share her faith.

In 2012, Rosemary was diagnosed with EHE of the liver. She didn’t let it control her life; she lived life to its fullest. Her biggest issue with having EHE was how inconsistent doctors were with their opinions as to what she would do or how serious it was. That deeply frustrated her. There is so much unknown about EHE. She was persistent with following up with different doctors with different expertise.The “unknown” was the most challenging part of EHE for Rosemary. Was it going to grow? Was it going to spread? What were possible treatments? She passed away in February of 2020 from a blood clot in the portal vein of her liver.

The EHE foundation was important to her because she found a community to lean on. She was an avid supporter and friend to the foundation. Upon her passing, her liver and tissue were donated for EHE research. As mentioned earlier, she was a giver by nature and if her donation can help someone else, her mission would be complete.You may also send a check to The EHE Foundation, 1561 Hopi Ct, Hobart, WI 54313