The EHE Foundation

EHE Research Update Teleconference – Nov 2nd

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Please join us for our annual “EHE Research Update” teleconference on Saturday, November 2, 2019 from 4:00 pm to 5:30 pm Eastern Standard Time (US).

Jane Gutkovich, The EHE Foundation’s Director of Research, will be going over these main topics:

  • What is EHE? Or rather EHEs? Why we all are so different? What have we recently learned about EHE biology and what it means for us
  • How close we are to “rational treatment choice?”
  • The “Georgian” vaccine: what we know and what to do next–brainstorming session
  • Overview of international EHE Group research priorities: What, Why and How

Also, we are thrilled to welcome Ben Nacev, MD, PhD, Medical Oncologist at Memorial Sloan Kettering Cancer Center (New York), as a keynote speaker on the call! Dr. Nacev will be talking about a new EHE initiative at MSK.

There are several ways to join the teleconference, which will take place on “Zoom.”  The meeting ID is 928 385 095.

Join from a smart phone/device

If you are joining from a mobile device (Android smartphone/tablet, Apple iPhone/iPad), you can simply download the Zoom Cloud Meetings app from the App/Play Store prior to the meeting.  Then, simply open the app and enter the meeting ID at start of the meeting to join the meeting.

Join from a computer

Go to https://zoom.us/j/928385095.  When entering a Zoom meeting for the first time from a computer you will need to download a small application file.  Please download this file prior to the meeting time.  We recommend you test your speakers and camera, if applicable.  You will also have the option to use for your phone for audio ( in conjunction with your computer).

Join from a telephone

If you are unable to join from Zoom on a computer or mobile device, then you can join on the telephone instead.  From the United States, call 1-646-558-8656 or 1-669-900-6833 and then enter the meeting ID.  If calling from outside the US, find your local number here: https://zoom.us/u/adLOBOxQ2w

Please contact Medha at mdeorassutliff@fightehe.org with any questions. 

International Sarcoma Kindred Study (ISKS)

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What is ISKS?

ISKS is . afree to participate global genetic, biological, epidemiological, clinical resource developed to understand the genetic basis of sarcoma in a population.

ISKS has created a world first, one of a kind, database that is accessed by doctors, researchers and scientists across the globe.

ISKS was developed by Australian EHE Medical Advisor, David Thomas and his team at the Garvan Institute.

Why We Need It

  • To create a unique global EHE resource to study genetic risk factors for EHE.
  • Contribute to a growing international body of knowledge to support patients, clinicians and researchers now and into the future.
  • Understand the genomic risks of EHE may lead to early detection strategies into EHE or sarcoma more broadly.

How You Can Help

Sign up today by emailing isks@garvan.org.au to receive your ISKS test kit requiring you to fill in a brief questionnaire and supply a blood sample and/or hair follicle. Your support will contribute to the EHE knowledge which may impact patients now and in the future.

EHE Foundation at ASCO 2019!

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EHE Foundation joined over 30,000 cancer experts from around the world in Chicago, IL in early June to learn of the latest clinical cancer research impacting patient care. The theme of this year’s conference is Caring for Every Patient, Learning From Every Patient.

EHE Foundation board members and staff participated in the patient advocate track and were given access to all scientific sessions and viewed posters focusing on sarcoma and EHE research. In addition, the Foundation attended the 2019 Annual SARC meeting – a four-hour meeting that includes scientific translational medicine presentation on new emerging science in the field of sarcoma and engages the sarcoma investigator community in the review of ongoing clinical research and discussion of opportunities for future research.

Also during ASCO, The EHE Foundation organized the annual Medical Advisory Board lunch meeting. Big thanks to AD Board members Drs. Okuno, Wilky & Burgess for the robust discussion with updates on fundraising, current research project portfolio, patient services, programmatic activities, and ideas for future directions.

The EHE Foundation and Cleveland Clinic Receive $1M Research Gift from the Margie and Robert E. Petersen Foundation

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FOR IMMEDIATE RELEASE
Contact: LeeAnn Conner, leeannconner@fightehe.org

Fundraising across the world will secure additional $1M through a matching grant from the Petersen Foundation

August 15, 2019 (Hobart, WI): The EHE Foundation and Cleveland Clinic received a major gift from the Margie and Robert E. Petersen Foundation. One million dollars will be donated to Cleveland Clinic to support EHE research conducted by Brian Rubin, MD, PhD, Chair of the Robert J. Tomsich Pathology & Laboratory Medicine Institute and a member of the Cancer Biology Program of Cleveland Clinic’s Lerner Research Institute. Dr. Rubin is a global leader in Epithelioid Hemangioendothelioma (EHE) research and this generous gift will support an ambitious research effort to develop effective therapies to treat the disease.

Significantly, the Margie and Robert E. Petersen Foundation also has agreed to match an additional $1 million in research funding if The EHE Foundation can raise another $1 million over the next three years. This fundraising will be spearheaded worldwide by Cleveland Clinic, EHE Foundation (US), EHE Rare Cancer Charity (UK) and EHE Rare Cancer Foundation (Australia). All funds raised and matched will enable Dr. Rubin to hand-pick a research team from around the globe that will complement his research. This fundraising partnership will catalyze the already energized grassroots fundraising of The EHE Foundation’s passionate supporters worldwide while breaking ground on vital EHE research. Donate now to the EHE Foundation, and your generous gift will be matched by the Petersen Foundation.

“We are grateful for this gift from the Petersen Foundation, which solidifies our relationship with The EHE Foundation and provides much needed funds for EHE research. The matching funds are particularly vital as they will strengthen our worldwide collaborative research group as well as The EHE Foundation,” said Dr. Rubin. 

“This gift will greatly intensify the EHE research and collaboration efforts by Dr. Rubin. With very little public funding available for EHE research, a private gift of this size with the potential of matching up to an additional $1 million will substantially propel our research and fundraising efforts,” said Julie Wahl, President of The EHE Foundation.

EHE is an unpredictable, rare vascular cancer. Similar to many other cancers, EHE is caused by a genetic malfunction that encodes a unique cancer-causing protein. Dr. Rubin and his colleagues are studying this protein to discover vulnerabilities that can be exploited therapeutically. 

The Margie and Robert E. Petersen Foundation’s generous gift will allow Dr. Rubin and other collaborative researchers to continue their quest to treat and cure EHE. 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.    

4th EHE 5K Virtual 5K Run/Walk a Huge Success!

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Once again many individuals and small groups of families and friends joined together in neighborhoods, parks, or local trails all over the nation to participate in the 4th Annual EHE 5K Virtual 5K Run/Walk. We surpassed our goal (to exceed last year’s participants) by leaps and bounds with 1,006 participants and $47,538 raised of which 100% will be used to fund EHE research.

No matter how or where you participated or supported, we want to say a huge THANK YOU for your extraordinary support. Thanks to those that hosted large groups to complete their 5K event together and those that encouraged friends and family to join their efforts across the nation. We measure the event’s success by its growth each year and YOU really helped us propel our accomplishments this year!

A “special” thanks to Kristen Carlton (Team Kristen Leigh), Joe (in memory of his wife, Yahaira), Jenni Kovach (#teamjenni), Katherine Czyzewski, and Julie Wahl (Team Laney) for hosting record sized groups for the event.

The Foundation also received wonderful support from a group of generous sponsors. We are grateful for the following sponsors of the 4th Annual EHE 5K.

Platinum: BWA South; Cushman & Wakefield; Giombetti Associates; Hansen Distribution Agency.

Gold: Ryczek Construction; V&P Hydraulic Products.

Silver: Monticello and Warren Animal Clinics; Team Laney; Team Kristen Leigh; #teamjenni