I was sorry to learn that Susan Davis died yesterday. I believe she was 58.
“Susan was a strong, vocal person who confronted issues head on,” says Shirley Mertz, a fellow MBC Network volunteer. “She played a key role in getting Rep. Rosa De Lauro (CT) to introduce a resolution in the House to declare October 13 as Metastatic Breast Cancer Awareness Day.”
In 2008, Susan helped direct a delegation of MBC members to Washington D.C. to lobby on behalf of MBC Awareness Day and other issues important to metastatic breast cancer patients (removal of use of pre-existing conditions to get insurance and removal of lifetime caps for medical care).
“Susan also played an important role in editing speeches that were given at previous MBCN conferences so that listeners were pulled into the patient’s story,” recalls Shirley.
For the past year, Susan served as METAvivor’s Director of Advocacy. “Despite severe health challenges, she retained her spirit and drive and was a constant source of ideas, action and inspiration,” says Dian M. Corneliussen-James, president, METAvivor Research and Support Inc. “She is greatly missed.”
“I live in a constant state of hopeful dread. I am hopeful I will be stable. I dread that my next test will show I am not. My son is now 20 and in college, and he says he cannot remember a time in his life when I didn’t have breast cancer. He has learned to live with uncertainty too. All of our families learn to. As do our friends.”
–Susan Davis, “Learning to Live with Uncertainty,”
According to her METAvivor bio:
Susan Davis was diagnosed with metastatic breast cancer to the lung in 1999 and to the liver in 2008.
She got involved in breast cancer advocacy in November 1999. Working with the Metastatic Breast Cancer Network, she spearheaded passage of the proclamation to make October 13 National Metastatic Awareness Day.
It passed both houses in Congress the first time out and helped gain recognition for metastatic breast cancer.
Susan served as Field Coordinator for Connecticut for the National Breast Cancer Coalition for six years, in addition to being the President of the Connecticut Breast Cancer Coalition. As President of the CBCC, she passed the “wig bill” which mandates insurance companies pay up to $350 for a wig each year a patient is in treatment.
NBCC launched the Working for a Cure breast cancer license plate, with revenues going to fund state research projects on breast cancer. Susan also started the Breast Cancer Emergency Fund that provided Connecticut women with breast cancer funding to meet needs for housing, heat, transportation, food and other expenses.
She served on the Breast Cancer Research and Education Committee, which distributes funds raised from the state income tax check-off box; she also served on the Treatment Committee of the Connecticut Cancer Control project; and was a member of the Breast Health Advisory Committee, which published the Breast Cancer Resource Guide for Connecticut.
A writer/publisher for more than 20 years, her work has appeared in The Breast Cancer Book of Strength and Courage, “Ms.” magazine, “Family Circle,” and “Barron’s” among other national magazines and books.
Thank you, Susan.
ihatebreastcancer 
Susan’s age brings back memories for me. My mother passed at age 58 of MBC. Here I am fighting at age 47. I lived much of my life in uncertainty as my mother was diagnosed when she was 49, and I was in high school. Thank you Susan for your work and dedication.
I didn’t know Susan Davis, but I would like to extend my sincere sympathy to her friends and family for her passing. Women like Susan are pioneers for the rest of us, who are not as brave. I thank her for her dedication to such a worthy cause.
I was diagnosed with MBC in July 2010 to the bones and earlier this year mets to the liver. Knowing that some like Susan Davis has worked tirelessly to help her sister metavivors means the world to me. I will keep her family and friends in my thoughts and prayers.
Thank you Susan Davis for all you’ve done, God Bless, and may you rest in peace.
Jorjanne
I knew Susan for many years. I knew her husband, Julian and her son. Susan was an amazing woman. May her memory be a blessing.
will there be a memorial for her soon. Some friends in her
community would like to say goodbye
Hi Cheryl
I sent you an email with more details.
In brief:
Susan’s funeral is Monday at Cedar Beth El on Forest Ave in Paramus, NJ at 1pm. Steven will be sitting shiva Monday and Tuesday at Susan’s home.
Many thanks to Susan for her outstanding work.
Thank you, Katherine, for this very moving tribute to a woman with incomparable insights and abilities and drive in MBC advocacy. I had the great pleasure of spending a weekend with Susan last spring. We roomed together at the LBBC Conference and manned the METAvivor exhibit table side by side. We had much time to talk. I have known many women at the end of their MBC journey but have never seen anyone as ill as Susan was then. Yet she was still on chemo at her insistence. The fact that she was even able to get out of bed surprised me greatly. Yet despite her condition, she was still tossing out strategies and ideas with every labored breath. There are no words to describe how incredible this woman was.
I am sorry that Susan had to go through this. For all metastatic people reading this, please don’t let Susan’s death be in vain. We must make others aware of this issue and get more funding and help to women living with MBC. God Bless!
[…] 2008, Shirley and her fellow volunteer, the late Susan Davis, launched MBCN’s drive to formally establish October 13 as National Metastatic Breast Cancer […]
[…] 2008, Shirley and her fellow volunteer, the late Susan Davis, launched MBCN’s drive to formally establish October 13 as National Metastatic Breast Cancer […]
I wish I had had the privilege to know this exceptionally brave and strong woman. I have had this past year a local recurrence of HER2+++, Estrogen and Progesterone – bc, which certainly is not the same or as serious as metastatic disease. Sadly, though, those of us in this limbo seem to be small in number and oncologists, at least mine, for sure, demonstrate astounding ignorance as to how to treat this category of bc. Have the Metastatic groups ever considered including in your bigger tent the small number of us with local and regional bc? Perhaps we could join forces?
Those of you lifers, regrettably much larger in numbers, have such an amazing number of fighters to promote the cause and educate the uninformed about the horrors of bc. I have been in awe of many of your fighters. You were so fortunate to have had Jane Davis valiently fighting with all her might until the very end. The only goods thing in your death,Jane, is freedom from further pain, suffering, and worry. All else is extreme sadness.
[…] Editor’s note: Sadly, Susan passed away on August 19, 2011. Read this tribute to her. […]
[…] at the 2011 MBCN National Conference. Joani Gudeman was a good friend and fellow MBCN board member. Susan Davis was a former MBCN board member and a true inspiration. To this day, memories of MBCN’s Ellen […]