Spotlight on Dana-Farber Advocates
Dana-Farber connection: Patient, member of Dana-Farber's Pediatric Patient and Family Advisory Council
Why I'm involved in advocacy: Because I would someday like to tell my grandchildren that when I was
young there was a disease called cancer and how it impacted my life as a
young adult. I feel like we all can make a difference by speaking out,
encouraging change and most importantly curing the disease and improving
the outcome effects of cancer treatments.
My advocacy experience: Sending letters and emails to senators, testifying at the
Massachusetts State House, being a panelist on the President's Cancer
Panel, attending conferences with others who have been affected by
Advice for anyone interested in advocacy: All you need is a voice and well-organized thoughts to make a difference.
Ellen R. Frank, PhD
Dana-Farber connection: Patient since 1996 and active member of the Adult Patient Family Advisory Council.
Why I'm involved in advocacy: I know that every voice counts and each of us has the power to
influence our world. I am deeply concerned about insurance coverage for
the costs of cancer treatment and the quality of life for cancer
survivors. One of the highest bankruptcy rates is among cancer
survivors. There have been deep cuts in cancer research institutions all
throughout the United States, and this is a potentially devastating
turn of events for all cancer patients. You and I can and will impact
My advocacy experience: I have successfully worked with members of Congress and the Senate to
create a federal mandate to insist every state Medicaid cover a new
drug for AIDS. I participate with the ACS in all letter writing
campaigns to influence government bills that impact cancer patients. I
have worked for non-profit cancer agencies to examine the impact of
early detection and screening on the incidence of cancer.
Advice for anyone interested in advocacy: Your voice really does count. It may simply be a matter of emailing a
letter or making a phone call. Whenever and whatever you are.
Dana-Farber connection: Patient, member of Dana-Farber's Patient and Family Advisory Council
Why I'm involved in advocacy: I want to be cured someday and would like to see more programs and
funding invested in improving the quality of life for cancer survivors.
So many advances have been made in discovering new cancer treatments and
any cuts in federal funding severely impact future progress.
My advocacy experience: Sending letters and emails to senators and representatives, attending
mission days on Capitol Hill, testifying at the Massachusetts State
Advice for anyone interested in advocacy: No special skills required. Getting involved can be as easy as
sending an email to your senator or representative, but it can make such
as huge impact.
Dana-Farber connection: Patient, family member and member of the Patient and Family Advisory Council.
Why I'm involved in advocacy: I am a breast cancer survivor and feel very fortunate each day. I do
rounding at Dana-Farber, where I speak to patients going through their
own personal struggle with cancer. Patients need advocates. It is
critical, and we need to have resources readily available to them.
My advocacy experience: Contacting people in our community who can help us to make a difference as well as raising money for cancer research.
Advice for anyone interested in advocacy: Just a desire to help!
Dana-Farber connection: Member of the Patient and Family Advisory Council, breast cancer patient
Why I'm involved in advocacy: During the course of cancer treatment at Dana-Farber, I started to
think of ways I could give back to the medical community that gave me
high-quality, focused, compassionate care. Together with other
like-minded individuals, I hoped to pool our hearts, minds and skills to
ease the burden of cancer patients (and their families and loved ones)
everywhere. It's a win-win when we can influence legislators to achieve
improvements in access to health care and insurance, when we feel
entirely comfortable in reporting uncomfortable side-effects to our
physicians (so that they in turn influence scientists to test and
produce less toxic drugs), and when we can encourage and help empower
cancer patients to take an active role in their own treatment plan.
My advocacy experience: Making calls and sending letters to my state representatives and
senators in order to give my view of pending legislation; personally
visiting legislators of the Massachusetts delegation on Capitol Hill on
behalf of breast and ovarian cancer patients; attending "working group"
meetings at the National Cancer Institute (NCI) that may result in
expanded budgets for cancer research; in short, being vocal.
Advice for anyone interested in advocacy: Think about experiences that forced you or a loved one to cope with a
cancer diagnosis and treatment. Or think about what you might have done
differently and want to advise other people (in similar circumstances)
to do. Or, think about people from underserved communities who need
other people to advocate for them – and what you might do to assist
them. The advocacy process usually begins with these kinds of ideas, and
gains momentum from that point on. You can do it, and we need you to