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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91 entries.
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
Nancy Glick from Washington, DC wrote on February 1, 2016:
After returning to work following treatment for a rare form of non-Hodgkin's lymphoma, I interviewed Ellen for a video on surviving cancer and it was love at first sight. She was the perfect interview and then immediately wanted to know how she could help me. Soon, Ellen invited me to join the NCCS board and I spent 5 years watching Ellen navigate different issues and policy considerations with respect for all sides. Ellen not only defined cancer survivorship but she was the essence of a true advocate -- informed, a great listener, a visionary and someone with the courage to take on tough issues and do it with class. We won't find Ellen again but we can celebrate all the progress in the fight against cancer that she made possible.
Debbie Curtis from Washington, DC wrote on February 1, 2016:
When I hear the word "advocate", Ellen Stovall is the immediate image that comes to mind. I have never met anyone who better personifies that term. She was an advocate professionally and personally. Her work will live on -- and her dedication has inspired so many to continue in her footsteps. I feel lucky to have known Ellen and learned from her and, like all of us, benefited from her advocacy. The world is s better place because of her and she is greatly missed.
Joe Waz from Los Angeles, CA wrote on February 1, 2016:
I was recruited to the NCCS board by Ellen and Robert Sachs and to serve for many years. She was incredibly persistent and persuasive, as was her trademark in everything she did. Her work will improve life for millions of people who will never know her name. I'm honored to be among those who had the chance to work with her.
Peggy Eastman from Chevy Chase MD wrote on February 1, 2016:
Ellen was a tireless advocate for cancer patients, overcoming her own symptoms and fatigue from cancer treatments to help others. She was an example of advocacy at its best, putting the needs of others before herself. I am proud she was my friend.
rebecca from oviedo wrote on January 22, 2016:
I am honored to have recently learned about Ellen. I have survived brain cancer since 1978 and I am encouraged and proud to have survived for 38 years. Your work is an inspiration.
Rebecca Nichols
Vivien Hoexter from New York, NY wrote on January 20, 2016:
Ellen was my cousin, my inspiration and mentor as I chose the nonprofit path and then ran a cancer support organization. I miss her terribly.
Vivien
Cookie Kerxton from Chevy Chase wrote on January 20, 2016:
I will miss Ellen terribly. I am pleased that she is getting the recognition she so deserves. She has done so much for many and is an inspiration to us all. Stay well.

Fondly,
Cookie Kerxton
Anne Di Rosa from Washington DC wrote on January 20, 2016:
Sending love and Prayers for the Stovall/Lewis families. What an AMAZING woman she was!!
Musa Mayer from New York, NY wrote on January 20, 2016:
As an advocate, I have learned for 20 years from Ellen's quiet strength, her ability to bring discordant voices together in the debates on cancer policy, her deep and thoughtful understanding of what it meant to be a cancer survivor, and the extraordinary work she did for all of us. She was the best of us and she taught us all to be our best selves.

Musa Mayer, AdvancedBC.org
Anna Petterson from Perth, Western Australia wrote on January 18, 2016:
Our 'cancer survivors' work in Western Australia has been influenced by Ellen's thoughtful and powerful advocacy for patients. Her work will be remembered and built on by many. Thank you Ellen!
Susan Dent from Ottawa Canada wrote on January 17, 2016:
Very sad news
Let's work together to prevent this from happening
Cure cancer: Save Hearts
Susan Henry from Oriental, NC wrote on January 15, 2016:
Thank you , Ellen Stovall, for being you........greatfully , a cancer survivor
Barbara and Jerry Freundlich from New York, NY wrote on January 13, 2016:
Ellen served on the Board of Directors of the Cure For Lymphoma Foundation, the predecessor to the Lymphoma Research Foundation. We will be forever grateful for her guidance in the founding days of our foundation and for the programs she initiated throughout her cancer advocacy. We are deeply saddened.

Barbara and Jerry Freundlich
Co-Founders, Lymphoma Research Foundation
Sherry Walker from Camp Hill, Pennsylvania wrote on January 12, 2016:
Ellen is well-known for her untiring efforts to facilitate the transition from cancer patient to cancer survivor. But she did not limit herself to just those with cancer. She took the time to help me through a very difficult surgery and recovery. She gave me the inspiration to advocate for myself and for others who are in similar circumstances. Largely through her efforts, I have been empowered to fight for myself and others as I know she would have done.
Kate Gerry from Washington wrote on January 12, 2016:
I'm so sorry to hear of Ellen's loss. She was warm, funny, intelligent, and passionate and I am honored to have known her during my time working at NCCS. May her courage continue to inspire everyone who knew her.
Barbara Rubin from Potomac, MD wrote on January 11, 2016:
Thoughts and prayers will be with you all at this very difficult time. In all my years, have never seen another human touch so many lives. You were very blessed to have had her.
Fondly,
Barbara & Alan Rubin
Carla De Landri and Fred Volpacchio from New York, NY wrote on January 11, 2016:
Ellen Stovall was a profile in courage, a hero.
Elmer Huerta from Clarksville, MD wrote on January 11, 2016:
Ellen inspired me to be extra sensitive to the feelings of a cancer survivor. I applied all I learned from her with my own mother Margarita, who died of cancer in 2006. Thank you Ellen for all you did for humanity.
Carol & Steve Zimmerman from Baltimore wrote on January 11, 2016:
What a really special person your Ellen was. We are so sorry she is no longer in this life. May her memory be a blessing to you.
Carol Anderson Kanga from Rockville, MD wrote on January 9, 2016:
How very blessed we are to have known and spent time with Ellen. I am deeply and humbly grateful to her for more reasons than I can possibly list here. My prayers and love continue to support her family and friends, as they cope with this enormous loss.
Cary Zahrbock from Minneapolis wrote on January 9, 2016:
Ellen has been my hero since I first met her at an NCCS conference a year after my third diagnosis of Hodgkins in the early 90's. She and the other pioneers of the Cancer Survivorship movement continue to be my role models for survivorship, advocacy, articulating the survivorship journey and graciousness. I am honored and humbled to have known Ellen, have learned so much from her and will miss her presence in this world. I will also continue to live with hope in my heart, as Ellen said "in the presence of hope, anything is possible". Thank you Ellen, for the difference you made in my life and the lives of so many.
Nancy Davenport-Ennis from Yorktown, VA wrote on January 8, 2016:
You shall be missed, Ellen. My heart mourns our loss. while recognizing your decades of honorable leadership in public policy on behalf of patients. Your kindness for all, compassion, fervent clarity on patient policy issues and your example shall serve our nation well. Rest well, my friend.
Bob and Nina Graves from Gaithersburg, MD wrote on January 8, 2016:
Ellen was truly a 'giver' and never a 'taker'. Truly an angel in life who will always be remembered for what she did for so many. We all thank Ellen for her past efforts and future efforts by the others who will work harder in memory of Ellen.
Susan Dodd from Concord, MA wrote on January 8, 2016:
Mine is one of the countless families to whom Ellen held out the hand of hope when someone we cherished appeared to be in a hopeless situation. My late sister-in-law, Colleen Mooney, loved Ellen with all her heart (as my sister Gael and I do) without ever knowing the joy (that Gael and I had) of meeting her. Colleen somehow knew that Ellen loved pea pods. Whenever we saw something pretty with a pea pod design on it, Colleen would say, "We ought to get that for Ellen!" And more than once, she did just that. Ellen was a constant presence in our lives, hovering over us like an angel. I know this is whimsical. It might even be silly. But I can't help imagining Colleen standing there waiting for Ellen with open arms...finally allowed to thank her in person. May their light and love continue to shine upon us all.
Dr. Larrie and Joyce Greenberg from Potomac, MD wrote on January 8, 2016:
In memory of Ellen, a woman of valor; a cancer survivor and advocate,; a proactive voice for those afflicted with cancer; a model for others on dealing with adversity; a wonderful friend, wife and mother.
Linda Niemiec from Rockford, IL wrote on January 8, 2016:
Sending caring thoughts to Briana & Jonathan!
Pamela Wawraszko from Pennsylvania wrote on January 8, 2016:
I enjoyed her company at the pool in the summer. She was a beautiful person and we loved talking cooking and laughing about things. Everyone will miss her. May she have no more pain and rest in piece with God! My thoughts our with her family at this sad time. Sending prayers!
Steve Friedman from Chevy Chase wrote on January 8, 2016:
Ellen helped changed the dialogue within the oncology community. Her impact was felt by survivors, clinicians and legislatures. I will always be appreciative of my time at NCCS and the leadership she provided.
Susan Newberry from Charlottesville, VA wrote on January 8, 2016:
I collaborated with Ellen on many cancer advocacy projects. She was a wonderful blend of strength, wisdom and compassion that made her a role model for many of us.
Susan and Gary Fisher from Rockville, MD wrote on January 8, 2016:
Our thoughts are with you, as with very heavy hearts we send our love and condolences.
Susan and Gary Fisher
Nina Miller from Chicago wrote on January 8, 2016:
Ellen has truly made a difference in the art and science of care for cancer survivors. Her grace, wisdom, and courage was ever-present and she will be sorely missed in the oncology community. I am personally and professionally saddened by the news of her passing.
Neeraj Arora from Boyds, MD wrote on January 8, 2016:
In 1994, I was "touched" by cancer and became a cancer patient. In 2002, I was "touched" by Ellen Stovall, and was transformed into a cancer survivor. The last few days, just like many others, I have cried, sometimes with tears outside and sometimes with tears within. But I have also smiled and been very thankful. There are 14 million cancer survivors in the U.S. today and I have been blessed to have been part of a select group of them to have been inspired by Ellen, to have been able to know her well, to learn from her, get her mentoring, and to be able to call her my friend.
An essential component of every survivor's survivorship care plan should be getting to know cancer survivors like Ellen who give you hope, inspiration, and help you in your journey to make your life more meaningful. I will always miss you Ellen and I feel very blessed to have been so influenced by you. Your fight is now over, may you rest in peace. Love you, Neeraj
Brian from NY wrote on January 8, 2016:
There really are no words - I will never forget how much you taught us all about integrity and doing what is right. You will be missed as a mentor and as a friend.
Alan Balch from Yorktown, VA wrote on January 7, 2016:
Ellen had a rare combination of passion, vision, perseverance, and personality that made her an inspiration to so many including me. She was an incredible force for good on behalf of cancer survivors.
Her legacy lives on in the hearts of those she inspired to be tireless advocates for a better future.
Dick Thompson from McLean,Virginia wrote on January 7, 2016:
Ellen Stovall was as dedicated to her cause as anyone I have ever known. I had the privilege of chairing the NCCS gala for several years. Ellen's passion and commitment to survivors was a very powerful message to recruit supporters of NCCS. She will be greatly missed with a legacy for the ages.
Ellen Miller-Sonet from NY, NY wrote on January 7, 2016:
Few people have had as significant and positive an impact on the world of those who are living with and beyond cancer. She has been the icon of inspiration to generations of patient advocates and I'm so very grateful for her leadership and vision.
Rebecca Kirch from Washington DC wrote on January 7, 2016:
Ellen has been a treasured mentor, cheerleader, and friend. I will miss our special Starbuck coffee chats and laughing over her beloved golden puppy stories, our mission mischief in carrying out our shared work of the heart, and the incredible force for change promoting quality of life priorities that she role-modeled for me and countless others. Words cannot capture how indelible her impression has been. I send my warm thoughts and sympathy to her wonderful family - the center of her world, hoping you feel comfort in time knowing how much Ellen was loved and how much and many she inspired, near and far.
Bo Aldigé from Alexandria VA wrote on January 7, 2016:
I wish I had the words to capture what my heart is feeling over the loss of Ellen. I always felt a special bond with her, even though our respective organizations' missions were at opposite ends of the spectrum. She always respected everyone's ideas and opinions, whether she shared them or not, and she was indeed the ultimate collaborator. I have so many happy memories of times working together on both policy and projects - the Clinical Trials Summit, the Tour of Hope, Breakaway from Cancer. Rest in peace, dear Ellen; you are and will be forever missed. Bo Aldigé
David J Bernstein, Ph.D. from Rockville, MD wrote on January 7, 2016:
I am so saddened to hear about this tragic loss. When my late wife Marti Stern Bernstein was diagnosed with non-Hodgkin's Lymphoma, she instinctively knew she did not want to be part of a pity party. She wanted to be with survivors and fighters who wanted to make a difference. That led her to Dr. Fitzhugh Mullan, the Greater Washington Coalition for Cancer Survivorship, the National Coalition, and our friend Ellen. Her love, support, and spirit held us both up, as it has for thousands of cancer survivors and their families. God bless you Ellen, and thank you for your friendship and the difference you were in the world.