Click here to read the Pledge: Edition 19, Q4 – Oct-Dec, 2019
The EHE Foundation Receives $450,000 Award from the Chan Zuckerberg Initiative
FOR IMMEDIATE RELEASE
Contact: Medha Deoras-Sutliff, mdeorassutliff@fightehe.org
HOBART, Wis. (Feb. 3, 2020) — Today, The EHE Foundation announced it will receive a $450,000 award from the Chan Zuckerberg Initiative (CZI) to drive progress towards treatments and a cure for Epithelioid Hemangioendothelioma (EHE), a rare vascular cancer. The award recognizes The EHE Foundation as part of CZI’s Rare As One Project, a program that provides $13.5 million in funding to a network of rare disease patient-led organizations. These grants are aimed at supporting and lifting up the work that patient communities are doing to accelerate research and drive progress in the fight against rare diseases.
“No one is more committed to finding cures for rare diseases than the patients and families of those affected by these disorders,” said Priscilla Chan, Co-Founder & Co-CEO of CZI. “We are proud to support patient-led organizations as they pursue diagnoses, information, and treatment options in partnership with researchers and clinicians.”
CZI will be providing The EHE Foundation with funding, training, community mentorship, and capacity-building services to assist in establishing a network of researchers and clinicians, convening their community, and developing a research agenda.
“We are incredibly grateful to CZI for their support and funding. The opportunity to be a part of the CZI Rare As One Project is game-changing in the rare disease world,” said Jenni Kovach, Board President of The EHE Foundation. “The knowledge of patients suffering from a rare disease is key to driving breakthroughs in research and treatment. The lack of resources and infrastructure to support such patient-led research has held progress back—but this program is a significant step forward in eliminating these barriers.”
About The EHE Foundation
Founded in 2015, The EHE Foundation is an international patient advocacy organization dedicated to seeking treatments and a cure for EHE by increasing awareness, pursuing scientific research, advocating for patients and bridging information between researchers, providers and patients. Through grassroots fundraising and the deep involvement of an emerging and tight-knit global community, The EHE Foundation has been able to jump start promising research, bringing hope to anyone affected by EHE. For more information, please visit www.fightehe.org.
About the Chan Zuckerberg Initiative
Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.
Giving Tuesday 2019 WrapUp
We are THRILLED to announce that we surpassed our #GivingTuesday donations from last year! We are excited to share the total on Tuesday, December 10th. We are beyond GRATEFUL!
THANK YOU to our many compassionate supporters for giving hope to those suffering from EHE. It is inspiring to know that our grassroots fundraising will continue to advance EHE research and gain us recognition from many outside agencies.
THANK YOU to our EHE family. While cancer is affecting your own lives, you found the spirit to rally your friends, families, and communities to help others on #GivingTuesday. You are the reason we continue the fight against EHE. A special thanks to those of you who shared your story. Thank you to the families who lost their loved one to EHE, but still manage to find the strength to carry on their loved one’s legacy by supporting our mission.
THANK YOU you to our generous donors who matched donations on #GivingTuesday. Your multiplying of funds propelled the motivation of our supporters and we could not have done it without you. A special THANK YOU to The Margie and Robert E. Petersen Foundation and Jenni Kovach (together with her family).
THANK YOU to our volunteers for standing alongside all of us in this fight against EHE. Your time and talents are priceless and we are grateful that you share them with us.
EHE Research Update Teleconference – Nov 2nd
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)
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.