The EHE Foundation

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.

Stronger Together on Giving Tuesday, November 30th

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As the season of giving and gratefulness is upon us, we want to thank you for being a part of The EHE Foundation family.  We appreciate you following our progress and investing in our passion: discovering effective treatments and a cure for EHE. We are thankful for our supporters, partners, and volunteers who make our continued progress possible. 

#GivingTuesday (Tues, Nov 30, 2021) is a global movement to celebrate and encourage giving after Thanksgiving, Black Friday, and Cyber Monday.  We are thrilled to announce that all donations will be DOUBLED up to $64,000 with personal donations by our very own Board of Directors. Your donation may also be TRIPLED by Facebook matching, starting promptly at 8am (Eastern Time) on Nov 30th. There’s even a chance your donation will be QUADRUPLED if your employer matches your donation.

This is your chance to multiply your impact in helping those affected by this extremely rare cancer by:

  • Donating through our Facebook Page (fee free). Matching applies to donations to any fundraiser or donate button on our Facebook page. Anyone is welcome to create their own fundraiser here.
  • Donating online on our website here. You may use a credit card, direct deposit (ACH), or PayPal.
  • Mailing a check payable to The EHE Foundation, 1561 Hopi Ct, Hobart, WI 54313.

You can trust that your contribution will go a long way in continuing our forward momentum in research for EHE.  This year alone we have worked directly with Margie and Robert E. Petersen Foundation who have now gifted a total of $4 million to fight EHE. This substantial funding will help continue Dr. Rubin’s valuable EHE research at the Cleveland Clinic and allow us to push forward towards our mission.  Explore the current funded research projects and initiatives here.

More About Matching

#GivingTuesay is a powerful day for giving and we are #StrongerTogether. Donations will be doubled and in some cases tripled and quadrupled!

The EHE Foundation Board of Directors
The EHE Foundation Board of Directors will personally match up to $64,000 of your donations made online, through Facebook, or mailed. This will DOUBLE your donation!

Facebook
Facebook will match up to $8 million of donations made via Facebook on #GivingTuesday. For the first $2 million, they will match 100% of donations made to The EHE Foundation.  This money goes very fast and starts promptly at 8am ET. For the remaining $6 million, Facebook will match 10% of donations made to The EHE Foundation. Matching caps are $100,000 per nonprofit and $20,000 per donor. Donors will be notified by Facebook in early 2022 if their donation was matched. This may TRIPLE your donation!

Employer Matching
After an employee or retiree makes a donation to an eligible nonprofit, such as The EHE Foundation, they fill out a matching gift submission request and submit it to their company’s HR department. Each company’s process varies. If the donation and our nonprofit meet the company’s guidelines, the company cuts a check to The EHE Foundation for the same amount as the employee’s donation (and sometimes even two, three, or four times that amount). This may QUADRUPLE your donation!

We know you have many options when it comes to giving, but we hope you will support those affected by EHE. If you would like more information or if you need assistance, please email us at [email protected] or call us at 1-877-460-4240 (toll-free in the US).

2021 EHE Fun Run & Walk a Huge Success!

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Thank you to our wonderful participants, supporters, and sponsors for making our 2021 EHE Fun Run and Walk a tremendous success! Together, more than 900 supporters across the nation helped raise more than $45,000. Thanks to the backing of our sponsors, every penny brought in for this event will go directly to EHE research.

This event does much more than create awareness and funding for EHE research. Each team represents an EHE patient with a very unique story.  The EHE Fun Run and Walk allows teams of families, friends, and other supporters to rally together and show their unwavering support for their loved one and other EHE patients.

“Year after year, we are amazed at the passion, drive, and dedication of our many supporters who help make the annual EHE Fun Run and Walk an extraordinary success,” said Julie Wahl, Vice President of The EHE Foundation, “For many families, it’s a time to reflect on the wonderful support system that surrounds us and come together in a positive and grateful atmosphere.”

“We had a huge outpouring of support for Team Joe and we thrive on their love, energy, and commitment to not only our family, but for EHE patients across the nation,” said Jennifer Mulligan of Team Joe supporters.  Team Joe was the top team for 2021.

Teams came together in a nationwide rally to fight against EHE and we’re excited to share many of their photos on our below. As a patient-led foundation, we understand the challenges of EHE, but we take comfort in knowing we are here to support each other and we are stronger together.

We are blown away by the effort of every individual and team. A huge applause for our top teams: Team Joe, Team Laney, #EthanStrong, Team Kristen Leigh, #JonathansWolfPack, Rick’s Incredible Cancer Killers, Team Matt, #teamjenni, Love for Lisa, Tiff’s Tribe, and Team John.

The EHE Foundation Receives $1M Transformational Gift from the Margie and Robert E. Petersen Foundation

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FOR IMMEDIATE RELEASE
Contact: Medha Deoras-Sutliff, [email protected]

Hobart, Wisconsin. (October 12, 2021) — The EHE Foundation announced today that it has received a $1 million award from the Margie and Robert E. Petersen Foundation to drive forward progress towards treatments and a cure for Epithelioid Hemangioendothelioma (EHE), a rare vascular cancer. This support provides capacity-building resources and essential funding for important Foundation-led research initiatives and will primarily focus on the first global EHE Patient Registry and the EHE Biobank.

“A private gift of this magnitude is transformational for our Foundation and will greatly intensify EHE research,” said Medha Deoras-Sutliff, Executive Director of The EHE Foundation. “Our patient-led research efforts are critical to understand the course of EHE and provides information essential to clinicians and researchers. We are so grateful to the Margie and Robert E. Petersen Foundation for their support.”

This builds upon previous gifts in recent years by Margie and Robert E. Petersen Foundation to The EHE Foundation and Cleveland Clinic. The funds directly supported EHE research conducted by Brian Rubin, MD, PhD., Chairman of the Robert J. Tomsich Pathology and Laboratory Medicine Institute at Cleveland Clinic. The Petersen Foundation had challenged The EHE Foundation to raise another $1 million over three years, which they matched to further fund EHE research at the Cleveland Clinic. The Petersen Foundation gifted another $1 million in 2021 to continue Dr. Rubin’s promising work at Cleveland Clinic. To date, the Petersen Foundation has given $4 million to fund EHE research.

“Our Foundation is 100% committed to finding a cure and supporting EHE patients and families,” said Jenni Kovach, Board President of The EHE Foundation and an EHE patient. “We are incredibly grateful to the Petersen Foundation for their years of support and funding. This award brings us closer to our goal – a world where EHE is treatable and curable.”

Automobile publishing giant Robert E. Petersen owned magazines such as Motor Trend and Hot Rod Magazine and founded the Petersen Automotive Museum in Los Angeles.

The EHE Foundation, founded in 2015, is an international patient advocacy organization dedicated to seeking treatments and a cure for EHE by increasing awareness, pursuing scientific research, advocating for and supporting EHE patients, and bridging information between researchers, providers and patients. Through grassroots fundraising and the deep involvement of a tight-knit global community, The EHE Foundation has been able to jump start promising research and create hope for EHE patients and their families. For more information, please visit www.fightehe.org.