In the News

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.

Giving Tuesday 2023 a Great Success

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Thank you for helping us reach our $150,000 goal on Giving Tuesday to fund the 2023 Research Grants Program! 

A special thanks to the 374 donors, 16 people affected by EHE who held successful fundraisers, and the countless individuals that shared their personal EHE story and our mission. We are grateful for your contributions and for standing alongside us in this fight against EHE, a one-in-a-million cancer.

For several years, Giving Tuesday has been The EHE Foundation’s largest fundraiser. It’s a global movement to celebrate and encourage giving on the Tuesday after Thanksgiving. This year The EHE Foundation’s Board of Directors personally matched donations up to a total of $65,000.

Jenni Kovach, President of The EHE Foundation, said, “This day of generosity unleashed the power of our EHE Community to come together in the name of research. This $150,000 will fund the 2023 Research Grants Program, which is essential to the advancement of research for EHE. We do not take for granted that our work would not be possible without supporters like you. Thank you so much.”

In 2022 alone, the foundation’s research investment totaled a record breaking $541,600, which included funding the 2022 Research Grants Program. These EHE-specific research grants are ongoing at world-class institutions and include three translational science grants that aim to identify potential treatments for EHE. Thank you to everyone who showed their support for The EHE Foundation on Giving Tuesday. We look forward to sharing our accomplishments as we fund promising research in 2023.

The EHE Foundation Attends CTOS 2022

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With sincere gratitude to each patient who has contributed to the EHE Biobank, patient-driven research was on the global stage!

Denise Robinson, The EHE Foundation Director of Research and Patty Cogswell, EHE Biobank Coordinator, presented a poster on the EHE Biobank on behalf of The EHE Foundation last month at the CTOS 2022 Annual Meeting in Vancouver, BC. The meeting brought together sarcoma specialists from around the world.

The EHE Foundation Biobank Poster for CTOS 2022

Click here to view a PDF version of our poster.

Patty Cogswell and Denise Robinson
Patty Cogswell, EHE Biobank Coordinator with Denise Robinson, Director of Research
Denise Robinson & Sylvia Stacchiotti, MD
Denise Robinson and Silvia Stacchiotti, MD
Scott Okuna, MD and Denise Robinson
Scott Okuno, MD and Denise Robinson

2022 EHE Research Grant Awards Announced

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The EHE Foundation has completed its 2022 EHE Research Grant cycle and is pleased to share that it has awarded the largest grants funding in its history – totaling $291,600 grants to three outstanding applicants. This amazing sum is complemented by additional private funds totaling $250,000, bringing this year’s total research investment to $541,600 USD. 

These grants significantly advance our mission to find effective treatments for EHE – and would not be possible without the support of our community! Thank you for your continued support!

The 2022 EHE Foundation research grant recipients are:

John Lamar, PhD | Albany Medical Center – Awarded $200,000

(matching a $250,000 private, designated donation toward this research)

Project: Use of Pre-clinical EHE Models to Identify Druggable Pathways to Treat EHE

Research Goal: To reveal pathways that can be targeted with existing FDA-approved drugs to either eliminate EHE or prevent its growth. 

Research Objectives:

1.   Identify druggable pathways that are required for TAZ-CAMTA1 activity and EHE growth/viability. 
2.  Establish and optimize an EHE transplant model system in mice for testing therapeutic compounds.
3.  Develop multiplexed in vivo assays in mice and use them to test multiple therapeutic targets. 

John Lamar, PhD

Ajay Pobbati, PhD | Cleveland Clinic – Awarded $65,000

Project: Repurposing an FDA-approved Drug for EHE Treatment

Research Goal:  To identify an FDA-approved drug that can sequester TAZ-CAMTA1 (TC), TEAD, or both in the cytoplasm and inhibit tumorigenesis.

Research Objectives:

1:  Identify drugs that relocate TC and/or TEAD to the cytoplasm using a subcellular localization screen. 
2:  Perform preclinical characterization of shortlisted drugs. 

Ajay Pobbati, PhD

Valerie Kouskoff, PhD | University of Manchester – $26,600

Project: Understanding and Exploiting the Genomic Instability Promoted by TAZ-CAMTA1

Research Goal:  To understand further how TAZ-CAMTA1 interferes with the DNA damage response and whether this interference represents a therapeutic vulnerability that can be exploited.

Research Objectives: Test the druggability of the DNA damage response interference by TAZ-CAMTA1.

Valerie Kouskoff, PhD

“Without the generous donations and support of the EHE community, we would not be able to award these grants. Together,  we are making a significant impact in EHE research, and the Foundation is entirely focused and dedicated to our mission to find effective treatments and one day a cure for EHE,” said Jenni Kovach, President of The EHE Foundation. She continued, “every single donation makes a difference.” 

Denise Robinson, Director of Research for The EHE Foundation, commented that “this year’s grant recipients brought forward the first significant opportunities to fund translational research that aims to identify effective treatments for EHE. These projects leverage years of EHE research and model system development, and if one or all of these researchers can identify drugs that are already approved for use, that potentially can be used to treat EHE – then this year’s research grants investments brings more than treatment; this brings hope.”

The EHE Foundation is grateful to our Advisory Board and expert reviewers for their time and careful consideration of this year’s grant applications. We are also thankful for the time and talents each of these researchers invest in EHE. And always, we are eternally grateful for the financial support of the EHE community, which allows us to fund this research. To learn more about previously funded grants, visit our Research Projects & Initiatives webpage.

The EHE Foundation Funds Fellowship Travel Grants

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In June, the EHE Foundation provided two Fellowship Travel Grants supporting young investigators’ participation in a workshop entitled “YAP/TAZ and TEAD: At the Crossroads of Cancer.” The workshop is hosted annually by the Telluride Science Research Center (TSRC) and this year was co-led by notable EHE researchers and advocates – John Lamar, PhD, Albany Medical Center and Guy Weinberg, MD, University of Illinois (retired).

The 2022 Fellowship Travel Grant recipients were:

  • Caleb Seavey, MD, PhD, Cleveland Clinic (US) – Dr. Seavey is a research fellow at the Lerner Research Institute and has been working in Dr. Brian Rubin’s Lab since 2019. Dr. Seavey’s presentation at the TSRC was entitled Loss of CDKN2A in epithelioid hemangioendothelioma enhances tumorigenicity and imparts cellular immortality, thereby facilitating the generation of the first cell lines of this disease.
  • Karin Schlegelmilch, PhD, The Francis Crick Institute (UK) – Dr. Schlegelmilch is a senior postdoctoral fellow in Dr. Erik Sahai’s lab. Her presentation entitled Modelling therapy resistance in cancer highlighted her research on the role of YAP signaling in the development of resistance to targeted therapy in melanoma which may shed light on mechanisms relevant for other types of cancer, such as EHE.

Dr. John Lamar, co-leader of the workshop, said “Karin and Caleb made major contributions to the workshop. They both gave outstanding presentations and actively contributed to the discussions. We are so glad they attended and grateful that The EHE Foundation supported these young researchers that helped make our workshop a success.”

The workshop was founded by Guy Weinberg in 2017 and brings together knowledgeable experts in the Hippo-YAP/TAZ and EHE fields to share their research during scientific presentations and talk science during group hikes and other social events. In addition to hosting recognized experts in these fields who have long-standing track records of successful research, Dr. Weinberg also believes in the value of having younger scientists attend the workshop; in his words, “…this advances and assures continued interest in important research relevant to EHE.”

The EHE Foundation has contributed specifically to this approach by funding the attendance of such ‘young faculty’ as Karin and Caleb through fellowship stipends. These efforts promote participation of talented young scientists and nurture the next generation of EHE researchers.

An important message from Jenni Kovach, President, The EHE Foundation Board of Directors

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I am writing today to share an organizational change to The EHE Foundation. After four years as a part-time contractor, Medha Deoras-Sutliff has ended her engagement with the foundation to pursue other opportunities. Medha will continue to provide her services to the foundation until the end of November to ensure a smooth transition. 

Medha came into the foundation at a time when we were experiencing much change and growth. She has been instrumental in building capacity, strengthening our fundraising efforts, expanding support to the EHE community, and improving our day-to-day operations. Having never heard of EHE prior to her role with us, Medha quickly became and will continue to be part of the EHE family.

As we plan to move forward, we will be hiring a full-time Executive Director that will concentrate on foundation management and development (both grants and fundraising efforts). We will be posting the position soon and hope to have someone hired by the end of the year. 

In the meantime, please join me in thanking Medha for her tremendous work and dedication she has provided to the foundation and to our community.