Ellen Stovall

Ellen Stovall with NCCS co-founder Dr. Fitzhugh Mullan and long-time colleague and collaborator Elizabeth J. Clark
Ellen attends a special signing of the Ribbon of Hope by President Bill Clinton
Ellen speaking at THE MARCH. NCCS was the key organizer of a nationwide grassroots campaign to make the cause, the care, and the cure of cancer the nation's top health priority.
Ellen speaks at THE MARCH in 1998.
Ellen with Gen. H. Norman Schwarzkopf at THE MARCH
Ellen Stovall with Sam Donaldson and Queen Noor, Rays of Hope Award Winners
Ellen Stovall with past board member Dr. Neeraj Arora and the late advocate Jessie Gruman.
Ellen at hill day with Rep. Lois Capps and Rep. Charles Boustany
Ellen with Shelley and Dr. Richard Pazdur
 
Ellen L. Stovall was a 44-year survivor of three bouts with cancer and advocated for more than 30 years to improve cancer care in America. From 1992 to 2008, Ellen Stovall was the president and CEO of NCCS, the oldest survivor-led organization advocating for quality cancer care for all Americans. After leading NCCS as president and CEO, Ellen served as the Senior Health Policy Advisor. She was a founding member of the Institute of Medicine’s National Cancer Policy Board and its successor, the National Cancer Policy Forum. Prior to the establishment of the Forum, Ellen was vice-chair of the National Cancer Policy Board and co-chaired its Committee on Cancer Survivorship. In that capacity, she co-edited the Institute of Medicine’s report “From Cancer Patient to Cancer Survivor: Lost in Transition,” which addressed the issues adult cancer survivors face.

Ellen passed away on January 5, 2016, suddenly from cardiac complications due to her cancer treatments. To many of us—likely thousands—she was a trustworthy friend, a mentor, a collaborator, a visionary. Ellen was all of this and more, and always with a generous heart, a keen mind, a quick wit, and unswerving ethics. How fortunate we were to know her; how grateful we are for her thinking and her work for all cancer survivors.


Blog Posts by Ellen

Cancer Survivorship: You’re Never Really Done

When the Imperatives of Quality Cancer Care were written by NCCS 20 years ago, one principle of quality care stated that, “Long-term survivors should have access to specialized follow-up clinics that focus on health promotion, disease prevention, rehabilitation, and identification of physiologic and psychological problems. Communication with the primary care physician must be maintained.” It […]

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Honoring Phyllis Torda, a Fierce Advocate for Patient-Centered Health Care

The National Coalition for Cancer Survivorship (NCCS), notes with sadness the passing of Phyllis Torda, a fierce advocate for patient-centered health care for more than 25 years. We at NCCS first came to know Phyllis when she was with Families USA as their Director of their Health and Social policies. Subsequently, we were very fortunate […]

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NCCS Responds to Two Recent Articles Covering the Complexities of Transparency and Shared Decision-Making Issues

Two stories in last week’s New York Times illustrate the complexities of the changing healthcare marketplace.  They both describe discrete issues that beleaguer and hinder the transparency and shared decision-making that we at the National Coalition for Cancer Survivorship (NCCS) call for when patients need to make an informed decision about their care.  We comment […]

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NCCS

Reflections on Cancer Survivors Day: Managing Survivorship for a Lifetime

On Sunday, June 7th, we are reminded by cancer centers to celebrate National Cancer Survivors Day®.  Today, there are a sea of colors for different cancer ribbons and wristbands, e.g., the ubiquitous pink for breast cancer, amber for bladder cancer, grey for brain cancer, yellow for all cancers, and so on.  But many of us […]

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The Impetus for Creating the “Imperatives for Quality Cancer Care”

The impetus for creating an issue paper entitled “Imperatives for Quality Cancer Care” (Imperatives) came from a desire for the National Coalition for Cancer Survivorship (NCCS) to have a snapshot of the state of both the art and science of quality cancer care for people diagnosed with cancer across three domains—psychosocial impacts of the diagnosis; physiological […]

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NCCS Senior Health Policy Advisor Ellen Stovall Responds to Susan Gubar’s “The Cost of Trials”

Susan Gubar’s voice as a woman living with ovarian cancer (The New York Times Well Blog, March 20, 2014) clearly describes the dilemma of how to manage some of the most distressing features facing people who want to participate in a cancer clinical trial—namely access to these trials and the matters associated with payment for the patient […]

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Sign Ellen’s Guestbook


Below is a guestbook where you can share your thoughts and remembrances of our dear friend and tireless advocate Ellen Stovall.

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Kimberly Calder wrote on March 1, 2016:
I have many, many memories of working (and laughing, always laughing) alongside Ellen as cancer survivorship advocacy was bursting into bloom. In my decade on staff at Cancer Care, Ellen and I were often scratching our respective heads in constant efforts to get the patients' experience to count where it mattered. She turned my skepticism on its head with The March especially. For that and more, I will always be grateful for the role she played in my life and work.
Eve Dryer wrote on March 1, 2016:
It was a blessing to be counted as one of Ellen's friends. She leaves an amazing legacy!
Ellen Sigal from Washington, DC wrote on February 25, 2016:
Ellen Stovall changed the landscape of cancer for patients. She was a lone voice in the patient movement far before it became popular in the cancer community. Ellen knew that hearing the patient’s voice and understanding their needs was crucial to progress on this arduous journey. She taught us that they were not only worthy of a spot at the table, but that their lead was the key to success.

Ellen showed us that one person can make a difference, and for that, she has changed the world.

She will be missed dearly but her vision and legacy will impact millions.
beverly and stuart greenfeig from rockville wrote on February 24, 2016:
We adored Ellen and we miss her friendship. As our friend, she taught us about what is really important--family, friends, and the courage to live an authentic life. She was a gift to us and an inspiration to all of us who were lucky to have her in our lives.
Meg Rodgers from BETHESDA wrote on February 23, 2016:
I met Ellen through my fiance Dan Waeger. Ellen hired Dan at NCCS, and she (and everyone there) was a key part of his support system. He walked in their door as a 23 year old dealing with lung cancer, whom many thought did not have long to live, and was treated as part of the team who was expected to contribute just like everyone else- he loved that. I was always so thankful that Dan had Ellen in his life. He always called her Boss Lady, and loved to tease her, but I think they were kindred spirits in many ways, the least of which was to make others immediately at ease and comforted in a time of need. When Dan's treatment for lung cancer stopped working the summer before he died, he sought counsel from Ellen. Despite the decades of years between them, I think Ellen was his most trusted cancer adviser. It was a role I could never fill, but was thankful that Ellen did. He could speak frankly with her about treatment options, the difficult decisions he faced and ultimately, the end of this life. And Ellen extended the same care and concern to me in my role as a caregiver. It was Ellen that I wrote when Dan was down. It was Ellen who helped us pick a hospice facility. It was Ellen who talked with me about things I couldn't speak of with family and friends. Dan loved and respected Ellen so much that he asked her to speak at his funeral—which she hated but did anyway. I've always felt that act spoke volumes about how Dan viewed Ellen and the NCCS family, who in the short time he worked there, became as big a presence in his life as his own family. Ellen's contributions to the cancer community are endless. And I am certain that anyone who spent any amount of time with her left a better person. And after all of the attention fades, there will still be a family that lost this dear woman, and many friends whose worlds are a lot less bright without her. I hope we all support them just like Ellen did for us so often. I will miss you Ellen. Thank you for truly saving my life.
Meg Columbia-Walsh wrote on February 23, 2016:
When I met Ellen, I was a young executive and new to Oncology. I had been hired by Michael Milken to build the largest public cancer portal, Oncology.com. I met Ellen at the screening of the HBO documentary, The War on Cancer. Ellen immediately took me under her wing, helping me to navigate the community, my bosses and asked me to be on her board, a great honor. I stayed for 3 terms and Ellen remained an incredible and loving mentor. She was so special as everyone knows, I admired her dedication, but mostly she was just so awesome and I loved her so much. I am so sorry for your loss and it was too soon.

Many blessings to all of you,
Love, Meg
Joyce and Larrie Greenberg from Potomac wrote on February 23, 2016:
Ellen was one of those few people who touched so many by her presence. We are certain she never realized how many people she touched, reminding us to convey our feelings to those who impact our lives while they are with us. She was so humble yet was such a force in her advocacy for cancer patients. She was also the 'go-to' person if you had a question about cancer issues, like the best center, who was doing what in cancer treatment, how to resolve dilemmas, etc. She will be missed as a friend and as an advocate for seeing cancer eliminated in our lifetime
Lynn Nye from La Jolla, CA wrote on February 19, 2016:
Ellen and her colleagues at NCCS changed the way we think about cancer. The work that she and her colleagues did was groundbreaking. “Cancer survivor” is now part of our vocabulary because of their dedication. Her presence will be greatly missed by the many, many people whose lives she touched. Our team has worked with NCCS on the Cancer Survival Toolbox since the late 1990s and it has become an important part of our lives. It was a privilege to know Ellen.
Doug Blayney from Stanford, California wrote on February 15, 2016:
Ellen is a memory from my earliest days as an ASCO volunteer. She was the first cancer advocate whom I ever met, and I remember her understanding the travails of the private practice, community oncologist. Later, as ASCO President, she taught me that "racing for the care" was as important as racing for the cure. Ellen continues to inspire our work to improve the quality of cancer care and the care of cancer survivors. May God bless you and keep you.
Becky Krimstein wrote on February 12, 2016:
It was an honor to know Ellen and serve on the NCCS Board of Directors. She spent her life giving of herself to help others. Ellen's legacy will live on for years to come through the millions of cancer survivors touched by her work. She was a friend and mentor to many, and a beacon of hope to us all.
Neil Schlackman wrote on February 12, 2016:
It was an honor and a privilege to work with Ellen and be her friend.
Sherry and Ty from Camp Hill, PA wrote on February 11, 2016:
God speed, dear friend.

Ty and Sherry Walker
Jeannine Salamone from Alexandria, VA wrote on February 10, 2016:
Ellen was a friend and a confidant. I always looked forward to her smile and her hugs. I am personally grateful for all of Ellen's support and guidance. She touched so many of us and she leaves an incredibly legacy behind -- one that we will honor forever and always be grateful for.
Nicole Tapay from Washington, DC wrote on February 10, 2016:
Thank you Ellen for all your work on behalf of cancer patients and survivors. Your warmth, care, sincerity and passion made you a wonderfully effective advocate. I am honored to have been able to work with you and learn from you and benefited from your mentorship and friendship. May you rest in peace knowing you have a legacy that will endure. My sympathy to your family and many friends.
Linda House from Indianapolis wrote on February 9, 2016:
Dear Ellen,
I do not know how to begin to adequately honor you. You touched so many in ways that were meaningful and lasting. You were kind, yet firm. You were supportive, yet directive. You were funny, serious, and sensible – each at just the right times. You were tireless in your pursuit of excellence on behalf of people touched by cancer – millions of them! You were accepting of those who were new to this work and brought all of us along with a style and grace which we can only hope to imitate. You were a wise adviser, a thoughtful strategist, a talented messenger and a generous collaborator. Most of all, I am eternally grateful to call you my friend. You are and will be missed every day. Until we meet again, rest peacefully, my friend.
Mary and Dwight Brock wrote on February 9, 2016:
We are so saddened to lose this wonderful friend, and we share in mourning her loss with so many others.
Grace Stovall Burkart and Barbara Stovall Soriano from Rockville, MD wrote on February 9, 2016:
Ellen was courageous, unselfish, caring, loving, and dearly beloved. She is too soon gone.
Aaron & June Blair from North Potomac, MD wrote on February 9, 2016:
Ellen proved that one person can make a huge difference through her work and every day life. As a good friend and neighbor since 1976 she will be forever remembered and deeply missed.
Kathy Giusti from New Canaan CT wrote on February 8, 2016:
The cancer community has lost an extraordinary woman who taught so many of us how to lead with compassion. I will never forget Ellen's patience and kindness showing me the way when the MMRF was just getting started. Her legacy lives in on many and her contributions were vast. We can all hope to touch as many lives as she did.
Ada Jacox from Heathsville, Virginia wrote on February 8, 2016:
It was a great privilege to serve on the Board of Directors of NCCS with Ellen for a decade, and to witness her great tenacity in trying to change the world of cancer survivors through the political process. She personally helped many survivors, including my family and me. We have lost an inspiring advocate. My condolences to her family.
Barbara Hoffman wrote on February 7, 2016:
Ellen channeled her brilliance, long hours of hard work, altruism, and humility to coalesce the cancer community to advocate for patient-centered care. She has touched and enhanced our lives in ways she could not have imagined when she first became an advocate. I’m grateful for the 28 years I was blessed to know Ellen as a colleague and friend.
Tom Smith from Baltimore Maryland wrote on February 4, 2016:
Ellen and I met when we were MUCH younger. We were both trying to convince ASCO that the newest hottest most profitable drugs were good, but we had a larger mission to take care of the whole person. And her family. And to think about pain, and distress, and suffering -- and how to overcome it, at a cost we could afford.

She has left an indelible mark on ASCO as well as the world. Her single mindedness about being centered on the PERSON, not the disease, slowly but surely changed ASCO. We went from the "lunatic fringe" to an integral part of every thing oncologists should be doing.
I can't be here -- training the next generation of Advance Practice Nurses at Hopkins on how to do palliative care -- but think daily of Ellen, her raised eyebrows and quiet exasperation, followed by her rock-solid determination to make us better. And she did.
Tom Smith
margo michaels from newton ma wrote on February 3, 2016:
Ellen was a mentor and colleague who shaped many of us. Her loss is a great one.
John Seng from Washington wrote on February 3, 2016:
We were very saddened to learn of the passing of Ellen Stovall.

I considered Ellen a good friend. She aided my family significantly by recommending researchers and care givers who could help my brother Will when he was diagnosed with pancreatic cancer. Thanks in part to Ellen's guidance, Will survived nearly a year instead of the initial three-month diagnosis.

Ellen helped me in numerous other ways, and we collaborated successfully on many projects and campaigns to support NCCS.

Although comparatively short in her physical stature, Ellen towered above all in advocating for cancer survivorship, and life.

Thank you, Ellen!

John
David Johnson from Dallas, TX wrote on February 3, 2016:
While serving as ASCO president I was privileged to work with Ellen on survivorship issues. She was an unbelievable partner and friend. Her dedication never wavered. Thank you Ellen - you will be missed. A fitting tribute would be for VP Biden to rename his moonshot “Ellen’s legacy”.
Ilene Miller from Bethesda wrote on February 2, 2016:
I met Ellen while working at Podesta Associates and spearheading a coalition of cancer organizations for our client, Friends of Cancer Research. I was inspired by Ellen's story and strength and especially her compassion for others. We spent several years together working on federal legislation to increase funding for cancer research. It was Ellen's mentoring and friendship that led me to my next professional role as the Executive Director of Cure for Lymphoma (now Lymphoma Research Foundation). At CFL, we continued to work together and I was blessed to have her counsel and constant support as I grew into yet another new role. 22 years later, I am a mother and advocate in the epilepsy community on behalf of my son who has a rare brain tumor. I often think of Ellen and everything she did for countless others - with survivors always front of mind and always with incredible grace. Ellen had a profound impact on my life - both personally and professionally - and I will continue to honor her memory by tirelessly advocating for those who are unable to speak for themselves.
Bob Cook-Deegan from Accokeek, MD wrote on February 2, 2016:
The news of Ellen's death broke my heart. I loved that woman, a true stalwart and one of the most valuable members of the original National Cancer Policy Board. I was shocked, because she had just talked to my cancer class (via phone) at Arizona State University a month before. What a loss!!!

She was truly dedicated, selfless, self-deprecating, and got things done with good humor and grace. The world was better because she was here, and much the worse for her being gone.

One of my goals in life will be to live up to what she would want me to do.
Kristin Holman Olson from San Francisco, CA wrote on February 2, 2016:
Where would we be without wise, sincere and genuine Ellen? My heart broke when I heard the news. It's hard to imagine DC without her. I'm so grateful for what she accomplished for all of us. She was truly a leader and a hero. Sending condolences to her family.
Jack Baruch, M.D. from Key Biscayne, Florida wrote on February 2, 2016:
Ellen was a gem of the highest quality, indeed a pleasure to have known personally and professionally. She truly personified what one would describe as having lived a rich meaningful and purposeful existence, one few of us could replicate. My deepest condolences to her family, friends and colleagues. Rest in peace dear Ellen.
Stephen Lewis from New York, NY wrote on February 2, 2016:
Blessed to have Ellen as a sister and so pleased that she led the way in the survivorship movement. Wish she were able to join Vice President Biden's new initiative on fighting cancer. She would have loved being a part of that.
Dr. Judith Ramirez from Lewes, DE wrote on February 2, 2016:
I had the pleasure of meeting Ellen at a conference. She clearly understood that living our vulnerabilities makes us courageous...I am ever grateful for her compassion and open heart...her work, her journey, is testament to living a joyous, meaningful life. I am grateful for her relentless advocacy...she carried our voice and we carry hers...deepest condolences to her family and friends. Peace, Peace, Peace.
Stuart from Butler wrote on February 2, 2016:
I got to know Ellen through my health policy work, when she asked me to speak at several NCCS meetings. But, like others, I really got to know her when a family member was struck with ovarian cancer. When my wife's sister, living two hundred miles away, was diagnosed we called Ellen for advice. She helped center us all. She made critical connections for us in New York, and she was available to help us understand how to handle the emotional stress and the medical decisions, and the aftermath. Ellen was a great comfort to us, and to many others. She was a wonderful, caring human being.
Karen Pollitz from Silver Spring, MD wrote on February 2, 2016:
I met Ellen when I was first diagnosed with cancer 20 years ago. Back then she threw me a lifeline that has kept me afloat ever since. She taught me that after the gut punch of this diagnosis comes caring, recovery, and the return of hope. And she demonstrated how to advocate for change so that many others can survive and be well. I will miss my friend and mentor, and continue working to honor her memory.
Ginny Valenze from Whippany, NJ wrote on February 2, 2016:
Ellen was one of the great pioneers and a true giant in patient advocacy. Countless thousands have lived longer lives because of her relentless commitment and dedication to ensuring their voices were heard. God Bless and rest in peace, gentle warrior. Your grace, wisdom and passion will forever be my compass, and I am so very grateful for having known you and having had the great honor of learning from you.
Joyce Bader wrote on February 2, 2016:
Ellen embodied kindness, concern, caring and support to anyone in pain and, most especially, to anyone wishing to transcend it. Her work embodied, on the other hand, focused strength. This combination is so rare and so needed. Her focused work on cancer survivorship radiated both a will and a loving kindness toward any kind of human suffering. She was truly a bodhisattva - a being whose compassion is fundamental to their being and moves them and everyone who knows them toward an enlightenment of love. She will be so very missed.
Lezley Blair wrote on February 2, 2016:
Ellen was such a lovely woman and I will always have fond memories of her as a childhood neighbor and family friend. She will be missed. With sympathy and remembrance,
Lezley Blair
Patricia Ganz, MD wrote on February 2, 2016:
It was my privilege to work with Ellen since the time she began her work with NCCS. We were often partnered in our work to improve the quality of life and quality of care for cancer survivors and all people/and families who experienced cancer. My sincere condolences to you all.
Carlea Bauman from Fairfax wrote on February 2, 2016:
I worked alongside Ellen in cancer advocacy for years, but it was just recently that I got to know her a bit more personally. I knew she was smart and tenacious before, but then I saw how deep her thoughtfulness, kindness and humor could be. This is such a great loss and I'm sorry I didn't have more time to spend with her. My deepest condolences to her family. Ellen made a tremendous difference in countless lives and she will not be forgotten.
Amy Berman from New York wrote on February 2, 2016:
Ellen was a hero to every person and family touched by cancer. She fought for surveillance of cancer survivors, better care, recognizing the person's goals and values in treatment decisions, and always advocating from a deep recognition of the person in determining value in care. She accomplished so much for so many in the face of cancer and the challenges of the effects of cancer treatment. She was fun, joyous, and a brilliant beacon. I miss my friend, Ellen.

With love and condolences to her family, friends, and her amazing colleagues at NCCS,
Amy
Betty Ferrell from Los Angeles wrote on February 2, 2016:
It was a great honor to know Ellen. I was inspired by her passion and her complete focus on always improving care . Ellen was always the clear voice in the room , speaking with the greatest integrity and compassion. She raised the bar for all of us and taught us so much. Betty Ferrell