The EHE Foundation

EHE Research Grants – Your Support Makes a Big Impact

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Lamar Lab at Albany Medical College Advancing EHE Research

The EHE community is fortunate to have Dr. John Lamar, PhD, Associate Professor in the Department of Molecular and Cellular Physiology at Albany Medical College, and his team, working to advance our mission to find effective treatments for EHE. Dr. Lamar’s lab, the ‘Lamar Lab’, has been actively studying EHE now for over five years with the support of the EHE community by way of grant funding, and today is a leading center of EHE research.

Dr Lamar’s interest was kindled from an existing broader interest in the YAP and TAZ proteins, either one of which plays a critical role in the onset of EHE. In 2019, the EHE Group, then comprised of the EHE Rare Cancer Charity (UK), The EHE Foundation, and the EHE Rare Cancer Foundation Australia, funded a small proof-of-concept study at the Lamar Lab entitled “Identification of TAZ-CAMTA1 Regulators”. The project results were positive with the Lamar Lab developing important tools for progressing research into the biology of EHE.

In the fall of 2021, The EHE Foundation awarded a 3-year grant to the Lamar Lab to investigate “TAZ-CAMTA1 Regulation by the Calcium Sensor Calmodulin”. Dr. Lamar’s efforts over the course of 2019 – 2021 were of course impacted by the Covid-19 pandemic; however, they persisted and published new findings. With continued interest and advancements, Dr. Lamar was subsequently awarded a $450,000 3-year grant with the objective to identify molecular pathways that can be targeted with existing FDA-approved drugs. This is exciting research that could lead to the identification and testing of already approved drugs that could more quickly be repurposed to treat patients living with EHE. Drug repurposing is so important for rare diseases, where large scale drug development and clinical trials are nearly impossible for ultra-rare cancers like EHE.

Dr. Lamar remains excited by the progress being made, saying,

“While there is still a lot of work to be done, the progress that has been made in the EHE field in the past few years is remarkable. I believe that if we can sustain this momentum, more effective EHE treatments are within our reach.”

The Lamar Lab Team
Image credit: John Lamar, The Lamar Lab & Albany Med Health System

Albany Med Health System featured Dr. Lamar’s research on EHE in an article titled, Research at Albany Medical College Brings Attention to Rare Cancer.

The Lamar lab is a collaborator with Dr Brian Rubin’s Lab at the Cleveland Clinic. Dr. Lamar and Ryan Kanai, PhD Student in the Lamar Lab have numerous publications with the Rubin Lab.

Dr. Lamar is co-leader of the annual YAP/TAZ and TEAD: At the Crossroads of Cancer workshop in Telluride, Colorado. First organized in 2017, this workshop brings together leading scientists to share data and ideas on YAP/TAZ and their interaction with TEAD.

To learn more about the Lamar Lab, the team, their work and publications visit their website.

2023 EHE 360 EMPOWERING PATIENTS Global Patient Conference

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Held on April 15, 2023, during EHE Awareness Month, the annual EHE 360 EMPOWERING PATIENTS 2023 Global Patient Conference featured an international group of clinicians and researchers presenting the latest clinical and research developments in epithelioid hemangioendothelioma (EHE).

This virtual conference left EHE patients and families, doctors, researchers, and advocates empowered with a broader understanding of EHE and a deeper connection to the EHE community.

SARC Talk Podcast Featuring EHE Research & Patient Advocacy

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In March Denise Robinson, our Director of Research joined Dr. Scott Okuno, Chief Medical Officer for SARC (Sarcoma Alliance for Research through Collaboration) to talk about EHE research and patient advocacy.

Their discussion beautifully lays out the challenges of facilitating research in the ultra-rare disease landscape. Denise and Dr. Okuno also talked about the growth of The EHE Foundation, its core programs and the needs of the EHE community.

SARC Talk is a podcast discussing the latest in sarcoma research. To find out more visit sarctrials.org. Listen to the SARC Talk Episode 5 here, or wherever you listen to your favorite podcasts.

Podcast Shares a Challenging Diagnostic Journey

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Jane Gutkovich, a founding member of The EHE Foundation and fierce EHE advocate, was a guest on World Cancer Day 2023 in the podcast Patient from Hell. Jane speaks with Samira Daswani in an episode entitled “Navigating Uncertainty, Making Decisions in the Absence of Data, Advocating & Caregiving”.

Jane’s journey resonates with many people who have lived through a cancer diagnosis or who care for someone diagnosed with cancer, where uncertainty and overwhelming decisions become all consuming. Jane eloquently shares the roles that family, caregivers, and patient communities play in helping rare cancer patients survive.

We are grateful to Jane for being such a passionate EHE patient advocate, and a driving force for EHE research. She is a true champion and never gives up. Hear Jane’s story here, or wherever you listen to your favorite podcasts.

The podcast is hosted Manta Cares, an online global community of cancer survivors and caregivers.

Good Vibes for McKenna, A Celebration Benefiting Cancer Research

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Thanks to “Good Vibes for McKenna, A Celebration Benefiting Cancer Research” for hosting an EXTRAORDINARY two-day event held January 21st and 22nd in Fort Myers, Florida. We truly appreciate their $25,000 donation to The EHE Foundation to support EHE research and for creating much needed EHE awareness! The event featured a fine dining experience and acoustic performance at Colleoni’s Ristorante Italiano on Saturday and an epic all-day concert at The Ranch Concert Hall and Saloon on Sunday. 

“Good Vibes for McKenna,” is a non-profit formed in memory of McKenna Helm who passed away from EHE on November 17, 2021 at the young age of 31. McKenna Helm was a fun, caring, empathetic, and poised young woman that brightened the life of everyone she touched. After her EHE diagnosis, McKenna focused on making the most of each day and turned to her next love, live music, for hope and encouragement.

The event included Cody Canada & The Departed, Ian Moore, Them Dirty Roses, and Ross Mead.

“Good Vibes for McKenna allows us to carry on McKenna’s legacy and spirit of loving and caring. It not only honors her life, but it also pays tribute to every person whose life she touched. Thanks to those who joined us in Fort Myers this past weekend.  We are already looking ahead to future events. We are incredibly grateful to the bands and sponsors for helping us support The EHE Foundation. Together, we are supporting research for those who are fighting the same rare cancer as McKenna,” said Bob Hebdon, President of Good Vibes for McKenna Inc.

“We are very thankful for “Good Vibes for McKenna” and everyone who came together in McKenna’s memory to make this a truly remarkable event.  This donation is dedicated to EHE research and will have a direct impact on those affected by this one-in-a-million cancer,” said LeeAnn Conner. LeeAnn and Julie Wahl are both Board Members of The EHE Foundation and accepted a $25,000 check on behalf of The EHE Foundation at the event.

The EHE Foundation is very appreciative to the event’s sponsors for their dedication to rare cancer research! Sponsors include Sam Galloway Ford, School of Rock Fort Myers, Luminary Hotel & Co., Colleoni’s Ristorante Italiano, Cozza Investment Group Inc., and Taco Works.