Appendix Cancer Pseudomyxoma Peritonei Research Foundation

Our core mission is to: (1) Fund and support research to discover new treatments for appendix cancer with the hope of one day finding a cure. (2) Fund and support educational programs for health care professionals and patients/caregivers & families to keep pace with the evolving science and to increase awareness about this rare cancer.

Better diagnosis, improved treatment, and ultimately a cure for every patient suffering from appendi

ACPMP undertook a strategic review and subsequently the board has done a significant amount of research regarding roles and responsibilities and developing a plan for sustained success. We have also provided training and educational opportunities to our full time communications and development manager who has grown with the organization and is increasing her leadership skills.

ACPMP is an active member of the National Organization of Rare Disorders (NORD) and engages in NORD sponsored programs with other rare disease organizations. We have signed on and supported a number of initiatives at the federal level related to funding for and recognition of rare diseases through letter campaigns with other organizations. We engage in thought leadership through publication of summaries and making available scientific research studies, presenting at the Society of Surgical Oncology annual conference, and sponsoring physician attendance at the SOO conference as well as other US and international physician educational conferences. ACPMP has a very active social media presence and participates in raising awareness through events such as international and national Rare Disease Day. We also lobbied for and established August as Appendix Cancer Awareness Month.

ACPMP has experienced at least 2 significant external changes in the last year. One is pandemic related, in that the in-person events we have historically held (both from a fundraising and educational standpoint) have not been possible. The second is some issues we had with our outsourced research grant program. From a pandemic standpoint, we were able to work with three trusted partner medical institutions to establish a virtual meeting that was very highly attended and well-rated by both the institutions and the attendees. This was hard work to organize and harmonize across multiple institutions, but their hard work and our coordination and support resulted in an event that was highly successful. The second area for adapting related to our grant program, which had some performance issues and a lack of progress from our outsourced vendor. We took that information and decided that we could bring the program in-house, developing our our review board and process. This work is still underway but there has been a lot of progress and all signs point to the increased flexibility that comes with taking on this responsibility. We will be issuing our first "in-house" RFP for award this year, in 2022.