Patient Advocacy Group

Our patient advocacy group is to support translational research that create important clinical trials and to help make those trials available to the brain cancer community. The advocacy group achieves its goals through the following efforts:

1. Advocates as "ambassadors"

The advocates serve as a vital link ("ambassadors") between the SPORE and the larger brain cancer community. The advocates have strong relationships with the brain cancer community and are perceived as lay experts due to their involvement with the SPORE. They are therefore able to raise awareness in the community about SPORE goals and activities, particularly as they relate to clinical trials.

2. Advocates and Patient Recruitment to Clinical Trials

The guiding principal is that advocates will only recommend a trial if it is one in which they, themselves, would participate in if qualified. This personal investment is critical to their success in educating and encouraging patients to consider participation in trials.

3. Advocate Input to the SPORE

The advocates are invited to attend SPORE meetings. The SPORE leadership recognizes the importance of the patient perspective in the conduct of the SPORE, particularly as it relates to clinical trials. Likewise, the advocates feel strongly that the patient perspective is heard.

Advocates

Get to know our patient advocates.