Comments during SPORE advocate luncheon, Monday July 17th, 2006

Dr. Herlyn and daughter Anje

As a basic tumor biologist working on melanoma, our laboratory has conducted research for many years on specimens of patients without having had direct contact with patients. This all changed 8 years ago, when I met Noreen O'Neill, a melanoma patient and activist who had only two years to see her Foundation for Melanoma Research (FMR) flourish. Noreen pointed us to the patients' side of the disease and the deep gaps in knowledge and treatment options. Over the years, after Noreen succumbed to the disease and her sister Kate took over FMR and volunteered as Advocate in our SPORE on Skin Cancer, we learned how important the interactions with patients' advocates are. Advocates are the strongest motivators for basic scientists to do work that directly translates to patients' issues, that points to better ways in diagnosis, prognosis, and therapy. Advocates connect the researchers to the importance and ultimate reasons for their work; no other group is more committed to better the lives of patients, every day. Advocates also take the long view and enthusiastically support new research strategies that will only bear fruit in years to come. Our advocate representative has become an integral part of all our activities in the SPORE.

Advocates are practical and connect the researchers to the politicians who ultimately provide the money for future research investments. The success of the SPOREs within the NCI is also the success of the Advocate community, which continues to push the agenda at both political and administrative levels. Patients' Advocate groups have created the energy and enthusiasm that is seen today in support for the SPOREs, they gained attention from Congress as wells as private philanthropists. Many researchers owe their funding directly to the incredible hard work by Advocate groups. Today there is an uplifted mood among SPORE researchers and advocates that was not seen in previous years. New approaches in treatment, new strategies for matching patients with the most appropriate treatments, and many new drugs are responsible for the new energy. The patients' Advocate groups deserve a deep THANK YOU for their incredible effort over the past years. Thank you for all you do and keep doing because it helps us and it helps you.

	NEWS

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