Rare Leader: Medha Deoras-Sutliff, Executive Director, The EHE Foundation
April 9, 2020
Name: Medha Deoras-Sutliff
Title: Executive director
Organization: The EHE Foundation
Social Media Links:
Disease focus: Epithelioid Hemangioendothelioma (EHE) is a rare cancer that belongs to the group of cancers called sarcomas. EHE is a vascular sarcoma. This means it originates in the cells that line the inside of blood vessels. “Epithelioid” refers to the elongated shape of the cells when seen under the microscope. The estimated incidence of this rare tumor is less than one per 1 million people. EHE has a difficult diagnosis odyssey. Patients struggle to find providers that see and recognize the disease. But recent scientific advances and successful efforts in raising awareness have drastically improved the correct diagnosis of EHE. It might be more common than had been estimated in the past. EHE appears more frequently in females than in males and can be found in all ages but seems to be more prevalent in young adults. Most common locations of EHE are lungs, liver, and bones. But it’s also found in soft tissue, skin, blood vessels, and many other organs of the body. The disease is unusual in that it can remain dormant or stable for many years. In its aggressive form, it is highly destructive and normally fatal.
Headquarters: Hobart, Wisconsin
How did you become involved in rare disease: My professional background is in public health and epidemiology. Personally, I’ve been through breast cancer twice under the age of 40. After my second diagnosis 15 years ago, it wasn’t easy for me to just move on. I felt a “fire in the belly” and tried to attend any kind of educational training I could to learn as much about cancer as possible. But I learned quickly that wasn’t enough. It was important to be intentional with that knowledge and take action as a patient advocate on behalf of others. The critical issues I faced as a young cancer patient—things like job interruption, parenting, pregnancy and fertility issues, body image, sense of isolation, fear of recurrence—are concerns that pop up for many others affected by cancer. I also got involved in legislative advocacy, where the patient voice is included “on the hill” in funding decisions around where the money goes in cancer research. So, my career shifted from public health and I moved into the cancer nonprofit world. I joined EHE Foundation a little more than a year ago as its first staff member and first executive director. I was drawn to the rare cancer landscape as it seems to be the next frontier in cancer research.
Previous career: When I finished graduate school, I started working as an epidemiologist with state and county health departments. After my cancer diagnoses, I became a patient advocate, and then joined as staff for several national breast cancer organizations: The Young Survival Coalition, FORCE: Facing Our Risk of Cancer Empowered, and the National Breast Cancer Coalition. Prior to my current role with The EHE Foundation, I was the director of scientific affairs at the National Breast Cancer Coalition
Education: B.S. in biology from Knox College, Galesburg, Illinois; M.S. in preventive medicine from The Ohio State University; Graduate of NBCC Project LEAD; Graduate of AACR Scientist↔Survivor Program
Organization’s mission: The EHE Foundation’s mission is to seek 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. Unofficially, patients rally around the “Just Live” motto. And we follow the rare disease motto “Alone we are rare, together we are stronger.”
Organization’s strategy: We are dedicated to pursuing effective treatments and cure for EHE, as well as providing support and resources for EHE patients and their families. Cancer is already tough, but rare cancers like EHE have the additional burdens of limited information, lack of solid research, and an absence of a standard treatment. To date, EHE receives little attention and funding for research, and is not a priority for the research community. We are trying to break down those barriers. Through grassroots fundraising and the deep involvement of an emerging and tight-knit global community, we’ve been able to jump start promising research, launch a working group of worldwide experts, and create hope and urgency for thousands of patients and their families.
Funding strategy: The EHE Foundation is only five years old but has tried to focus on a wide range of funding channels. At our base is a dedicated grassroots fundraising effort. Several of our board members organize an annual fun run/walk. Anyone can participate either virtually or in person at local events. Our other main fundraising initiative focuses on the annual Giving Tuesday and Facebook matching in November. However, there is no way to overstate how valuable the personal connection can be in rare disease. Through dedicated efforts of patients and board members sharing our mission and urgency, we’ve secured key individual and corporate donors. In the last couple of years, we’ve also cast a wide net for foundational support and have been successful with significant private grants directed to the organization. We also try to think out of the box by partnering and supporting grants to key medical institutions conducting EHE research, like Cleveland Clinic and Memorial Sloan Kettering.
What’s changing at your organization in the next year: This year is a transformative one for The EHE Foundation, structurally and programmatically. In the past year, we went from being an all-volunteer organization to having a full-time executive director and bringing on several part-time consultants. This year, we have initiated several key research projects that will move into implementation stages: establishment of EHE biobank for tissue donation, a fully integrated patient registry, and a multi-institutional retrospective case study of EHE patients. Significantly, in early 2020 the EHE Foundation was selected as one of the grant award recipients of the Chan Zuckerberg Initiative’s Rare As One Project. This is game-changing for us. We join a network of rare disease organizations that will receive significant funding and capacity building support from CZI to focus on forming a patient-led research network in our disease area, ultimately leading to treatments and cure for the disease. The resources and support for a rare cancer organization that come with this grant (let alone the social media exposure and awareness) are priceless.
Management philosophy: I’ve learned how important it is to be flexible. There’s not a one-style-fits-all approach, especially when you are working remotely and don’t have the chance for face-to-face interaction. You can’t walk into an office and sit down and talk. You can’t read body language. So being a good listener and providing consistent and clear communications is super important to me. I also value empathy, especially because most of my team members are volunteers. The work we do is important, but more so is self-care and family. I truly believe one is only as good as your team. Bringing together the right people, giving them space, trust, and respect has always been successful for me.
Guiding principles for running an effective organization: My guiding principles include having a strong connection to the mission, mutual respect, consistent communication, transparency, and avoiding groupthink. Bringing the right people to the table: patients, caregivers, researchers, industry, key partners. I have great respect for basing decisions and priorities on evidence-based research. Also, in the sometimes-crowded cancer landscape I can’t abide siloing, or the duplication of resources. To me, fostering relationships and collaboration is the way to go.
Best way to keep your organization relevant: Staying relevant means your constituents and stakeholders—everyone we serve—feel that the organization brings them value. To do that, we have to make it a priority to figure out how to learn and periodically assess what it is our constituents need. These needs can be anything from providing a listening ear, financial assistance for things like genetic testing, access to medical providers for second opinions, all the way to effective treatments for their disease. You can’t assume anything as the patient journey is always changing. It’s easy for organizations to lose relevance if they start to gain steam and charge ahead on a mission without regularly touching base with their constituents. Staying relevant can also mean being courageous enough to admit when you’re off course or realize that what you are providing is no longer of value. My hope is that our organization will always be in a place where we don’t have to shout out our value—that our constituents are readily able and willing to do that. That type of relevance, passion, and connection with stakeholders is valuable and what keeps us grounded and on the right path.
Why do people like working with you: Even though I’m not an EHE patient, I have “walked the path” and I hope my team senses my commitment to our patients and the organization’s mission to find treatments and a cure. I hope others recognize my desire to make sure priorities and initiatives are guided and based on evidence-based research. And that I’m happiest when I’m communicating with people. I strive to nurture relationships and partnerships based on mutual respect. It’s not about me. It’s about us.
Mentor: My fellow patient advocates, many who we’ve lost to cancer, and who paved the way for me are my mentors. We’ve stood side-by-side supporting valuable legislation directing precious research dollars, attending scientific conferences, participating in grant reviews together, and just supporting each other through cancer diagnosis and treatment. Just listening to someone who has personally been through hell, but chooses to speak on behalf of others, is inspiring. I’ve also learned a lot from founders who are able to sustain and adapt over time. They are my touchstones and inspire and inform my work constantly.
On the Job
What inspires you: Our rare cancer patients and their caregivers who battle seemingly insurmountable odds from even getting a diagnosis to seeking care and treatment.
What makes you hopeful: Seeing the research money going in the right direction and the time and effort paying off in specific, strategic ways. For instance, we are putting effort and funding into scientific partnerships focused on EHE cell line development, which is critical for developing treatments for rare cancers like EHE. And with support from our Foundation just this past year, the first genetically engineered mouse model for EHE was developed. These are big milestones for a rare cancer. It will garner industry attention and funding and bring us one step closer to treatments for EHE patients.
Best organization decision: I am super proud of our Board’s decision to value expertise and bring on paid staff. It’s a tough and courageous choice for an all-volunteer organization to direct dollars away from patient support and research. But having dedicated staff can help move the needle forward and take things over the finish line.
Hardest lesson learned: In rare cancer, many of the issues patients face (financial, psycho-social, access to care and dearth of effective treatments) are the same as in other more common cancers but you have to shout loudly to even get noticed. You can’t rely on traditional funding, institutions or industry for help. Unlike breast cancer, EHE has little or no effective treatments. I’ve had to step back and do a lot of listening and learning in this new world. I had to rethink strategies and my voice. It’s been humbling and worthwhile—and a good challenge for me at this stage of my career.
Toughest organization decision: The toughest decision was to go all in this year on an incredible funding opportunity that would double our operating budget and bring us to the forefront of the rare disease landscape. It’s scary for a small, grassroots organization to take that leap. With the attention and money comes a whole lot of work for a small organization, but it’s the best decision we have made. With the opportunity has come a whole new world of resources and support that I am convinced will be game changing and greatly accelerate our progress.
Biggest missed opportunity: I have to acknowledge the elephant in the room here. We are all dealing with a lot of disappointment and fear that COVID-19 has wrought in disrupting lives and organizations. Key meetings this spring have been canceled; labs are closed. Our patients are worried about continuity of care. Our Foundation Board has moved mountains to get researchers interested in EHE—and now priorities must shift and progress slows. We are all struggling with a sense of loss and a real fear for our patients and of regaining momentum.
Like best about the job: Absolutely my EHE Foundation team. We have eight board members, several of whom are patients or parents of patients and all are deeply committed to the mission. I’ve never been part of a team like this. Not only do they each bring specific skill sets, but they go above and beyond. I also love that we’ve been able to successfully work 100 percent remotely like we do. It saves so much money and resources.
Like least about the job: I wish for more face-to-face time with my team. I’m a communicator and a people person. I hope that, down the road, we will have funds to schedule retreats or something along those lines to bring us together and not just virtually.
Pet peeve: Duplication of services and resources – and lack of transparency. And the “pinkwashing” in the breast cancer world.
First choice for a new career: I love the space I’m in, but it would be a dream to lead a “moonshot project”—disrupting the status quo, including the patient advocate voice, and bringing together a diverse coalition to try and finish this war on cancer.
Most influential book: The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee. And I have to mention the Harry Potter series by J.K. Rowling—reading those books together has been transformative for my family over the last 20 years.
Favorite movie: Love British TV/movies, and Pride and Prejudice is a favorite. Also, the Lord of the Rings trilogy. And I highly recommend the recent documentary, Breakthrough, the Story of Jim Allison.
Favorite music: That’s a tie between ‘90s alternative and classic ‘70s rock.
Favorite food: I’m first generation Asian-Indian and was raised in the Midwest. It’s been a melting pot of foodie experiences. But my favorite food would be my mom’s Indian cooking that I grew up on.
Guilty pleasure: Wine and cheese
Favorite way to spend free time: My favorite way to spend free time is playing tennis. I’ve played since I was young and it’s my happy place.
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