VBCF: The Early Years

Blog post by:  Mary Jo Kahn, VBCF Co-Founder

Virginia Breast Cancer Foundation began with nothing, really nothing, but a handful of angry women.  That may sound harsh, but there are things you should know about breast cancer 20 years, even 40 years, ago.

When my mother was diagnosed in the 60’s, the words breast and cancer were almost never said in public and people whispered them in private.  Twenty some years later, some things had changed.  Cancer could be discussed in the open, even breasts could be, but breast cancer was still whispered, as if it were something embarrassing to have.  Meanwhile, the lifetime risk of having the disease had risen steadily from 1 in 20 when my mother was diagnosed to 1 in 9 when my sister and I were diagnosed in 1989.  Yet even with this startling rise in incidence, there was no press coverage, there was no public out cry, there was no special outlay of research money to combat this disease. Breast cancer was a silent epidemic.

The founders of VBCF met in a breast cancer support group at MCV after our diagnoses.  It was a time in America when women were shaking their heads and were wondering what was going on here.  We felt like women were dropping like flies, yet no one seemed concerned about helping us.  Then we got angry!

In the spring of 1991, Patti Goodall, because of a chemo complication, was in the hospital watching the Today Show.  That day they were interviewing Elenor Pred who was organizing a Mother’s Day Rally inSan Franciscoto raise awareness about the breast cancer epidemic. Patti picked up the phone and called 411San Franciscoand asked for Elenor Pred.  Low and behold, there was only one, and she and Elenor had a long conversation.

When Patti came back to support group she was fired up as was her good friend, partner in breast cancer, and another member of our little support group, Sherry Kohlenberg.  It really did not take much persuasion to talk the rest of us and a few members of the autologous bone marrow transplant support group into following Elenor into action, even if we did not have any idea what that meant. We started planning our own Mother’s Day Rally.  Footnote:  it was exactly 4 weeks until Mother’s Day, not exactly a reasonable time frame for pulling off a statewide rally.

Undeterred, on Mother’s Day, 1991, on the Capitol grounds by the BellTower, we had our first Mother’s Day Rally.  The support group and some family members got together at my house and made posters. We had our first T-shirts made.  We had speakers.  Dr. Harry Bear was one of those speakers, if my memory is correct.  Most importantly, we got press coverage!  Our children had made some really sweet posters that were on the front page of the next day’s newspaper.  As a result of the rally, The Richmond Times Dispatch did a whole story on the current state of breast cancer and our nascent organization’s efforts to eradicate it.  We had met our first goal:  to raise awareness.

After the rally was over, the five founding members of the Virginia Breast Cancer Foundation, Patti Goodall, Sherry Kohlenberg, Phoebe Antrim, my sister, Judith Ellis, and me, knew we had another goal yet to meet.  We needed to make sure enough research money was available not just to make progress on breast cancer, but enough to actually eradicate the disease.  Most of us had young children.  What we were fighting for was prevention.

Patti continued her conversations with Elenor and soon learned of a meeting Elenor was planning in Washington,D.C.  Patti had to work and could not go. She called me and I was able to rearrange my schedule.  The next day, my 12-year-old daughter, Michelle, and I took the train to Washington and began an unbelievable journey.

Our first meeting was with organizations that had been communicating with Elenor Pred after her TV appearance.  Besides Richmond and San Francisco, there were groups there from Arizona,Boston,Vermont,San Diegoand three or four other locations.  At some point in the meeting, I took a step back and studied the people around the table. Separately, but simultaneously, there were strong, intelligent, articulate women from all over America saying enough is enough. It was a true grassroots movement, not lead from the top down, but by the unified determination of many.  At that moment, I realized we were an unstoppable force…and we would succeed.

Our little band of Elenor’s groups headed for the National Cancer Institute and met with the Director there and many of his heads of departments.  We were totally stonewalled.   Although Elenor kept interrupting to say they should be listening rather than talking, the director insisted $30 million was more than enough money, and we should be satisfied with the progress they were making.  Later that year, Bernadine Healy, the first woman Director of the National Institutes of Health, betrayed all women by telling Congress that it would be dangerous to allocate any more money to breast cancer research.

The next day, there was a meeting of approximately 100 other breast cancer groups, to explore joining together in some sort of coalition with a unified goal of securing more funds for breast cancer research.  I remember introducing myself that day as being from Richmond,Virginia representing a group to be named later.  We may not have a settled on a name yet, but we knew we would be part of this coalition.  To eradicate breast cancer it was going to take Virginia and 49 other states.

Next, we invited every person who might possibly be interested to an organizational meeting in my living room.  Maybe 20 people came.  That night, we named ourselves, decided to be a statewide organization, decided to incorporate and explore becoming a non-profit.  I was made president, possibly by default; I was the only one who had time to do it.

We immediately volunteered to be on the working group that later became the Board of Directors of National Breast Cancer Coalition.  We were the first Chairs of the Grassroots Taskforce for NBCC.  There we took what we had just learned about organizing breast cancer advocates in Virginia to the other states.  We helped them to put on Mother’s Day Rallies, to form legislative telephone trees, and to recruit membership.   Holding a seat on the Board of NBCC for twenty years has meant twenty years of hard, time consuming, financially challenging work.  Few organizations in the country have contributed as much as VBCF has to the national, as well as, the state, efforts against breast cancer.

I was recently reminded of our first trip to Washington to meet with our Congressmen.  Twenty years ago, we were relatively young women, some of us not yet forty and we were scheduled to meet with Senator John Warner’s health aide.   The aide made the mistake of saying to us, “Well, everyone has to die of something.”  We had a reporter with us that day and the aide ended up being quoted in the paper. Despite his aide’s faux pas, Senator Warner became our biggest advocate in Congress and the following year became crucial in securing research funds through the Department of Defense.

As Grass Roots Chairs for NBCC we were key in organizing the Do the Write Thing Campaign.  Each state was asked to send letters to each Congressperson and the President equal to the number of new cases of breast cancer in their state that year.  Our number was around 4200, we sent 10’s of 1000’s.  Nationally, we needed 43,000 letters; over 2 million were collected from around the country.  The overwhelming success of the Do the Write Thing Campaign proved we were a force with which Congress must reckon.

The votes in Congress for the breast cancer research money that year went down to the wire.  There were a few Senators who were in tough races for re-election in 1992 and were courting the women’s vote.  At the last moment, these Senators reversed their no votes. When the other Senators, who had voted no, realized the bill was going to pass, they rushed back to change their votes to yes—the vote was overwhelmingly in our favor!  We won our fight for $300 million more!

Breast cancer research monies have continued to increase because you are still persistent and still a force to be reckoned with.  There is so much history that the Virginia Breast Cancer Foundation has made and so many more accomplishments for which you are responsible.  I am so very proud of you.  Many times pioneers, who start organizations, are the organization and when they leave, the organization folds.  That is not what happened to the Virginia Breast Cancer Foundation. Since the founding members and a tough band of early volunteers laid the groundwork, you have matured, thrived, and grown into a more powerful force against breast cancer each year. I had to leave after my second bought with breast cancer around 1999.  Others retired for other reasons. Many have died.

I know you have all felt the pain of losing a friend or loved one to breast cancer.  It is in their memory, it is for yours and my future, and it is for our collective children that you continue to fight.  The eradication of breast cancer is going to happen.  Trust me, you are still an unstoppable force and you will succeed.