A Profile of Change: Nancy's Story
When I was diagnosed with stage 4 follicular non-Hodgkin's lymphoma (NHL) in August 2000, I knew little about the disease. I was surprised at the number and complexity of decisions I needed to make regarding my treatment and quickly began to educate myself about the disease and my treatment options. I completed various forms of treatment and eventually achieved clinical remission in June 2002. I was thankful, but it was difficult for me to 'live with lymphoma' since there is currently no cure for follicular NHL. I realized I could not become complacent during my remission and that research holds our hope for a cure!
This realization and my participation in various LRF activities as a cancer patient inspired me to get involved and do my part to help make a cure for lymphoma a reality. In June 2003, I participated for the first time in Blood Cancer Advocacy Days in Washington, D.C. With no prior political experience, my husband and I learned the power of public policy and advocacy and that every voice counts! As advocates, we have the opportunity to influence issues that affect the lymphoma community, such as funding collaborative approaches to blood cancer research and hastening the approval of promising new treatments.
My enthusiasm grew and in September 2003 I responded to a call for volunteers to start LRF Chapters in their local communities. I was the founding member of the Central New Jersey Chapter and currently serve as Chapter President. Our program areas include education, fundraising and public policy/advocacy. To date, we have raised over $300,000 for research and patient education!
Recently I had two additional opportunities to increase my knowledge and understanding of the importance of public policy and advocacy. On March 1, 2006, I appeared before the House of Representatives Appropriations Military Quality of Life and Veterans Affairs Subcommittee. I was one of 24 public witnesses testifying in support of a range of issues relevant to the military community. I opened my statement with, "I am a lymphoma survivor in search of a cure!" I shared statistics about lymphoma, its affect on the lives of patients, and the association between Agent Orange exposure and blood cancer in military personnel and veterans. I called on the Subcommittee to provide $10 million for a dedicated blood cancer research program at the Department of Defense.
Subsequent to this incredible experience, I participated as a "Survivor Advocate" in the Scientist-Survivor Program at the Annual Meeting of the American Association of Cancer Research (AACR) in April 2006. This exciting program fosters enduring partnerships among the survivor, advocate and scientific communities and promotes the exchange of information on cancer research, survivorship, and public policy to accelerate progress and eventually eradicate all cancer.
I have gained a renewed strength and sense of purpose through my advocacy efforts. As LymphomADVOCATES we must actively work to make blood cancer research a national healthcare priority. In a time of constrained budgets, it is crucial that we educate our elected officials about lymphoma, the burden of this disease and the broad reaching benefit of blood cancer research. It is very rewarding to realize the power of our collective voice and to provide hope to all lymphoma patients.
