SEMI-ANNUAL UPDATE FROM THE ANAL CANCER FOUNDATION
We are forging a dynamic and comprehensive approach to improving the anal cancer patient experience. In the last six months, we celebrated a series of firsts for our organization and the broader community.
Breaking Ground: First Anal Cancer Conference
The International Anal Neoplasia Society (IANS), the medical society that we provided seed funding for last year, will hold the first ever scientific conference specifically focused on anal cancer. The International Interdisciplinary Forum on Anal Neoplasia will be held on November 22-24, 2013 in San Francisco, California. Prior to 2012, no such medical network or conference existed. For the first time, clinicians and scientists will present their latest research in an exclusive anal cancer forum. This will provide a phenomenal platform for shared scientific knowledge and collaboration. The society and conference will have an enormous impact – and we thank you for supporting its creation!
Foundation Executive Director Justine Almada with Dr. Joel Palefsky and Dr. Karl Munger at HPV 2012. Palefsky is the President of IANS, which will hold its first conference in November. Both Palefsky and Munger are members of our Scientific Advisory Board.
And the Winners Are…
Purple and Green! We recently engaged the anal cancer community in a ribbon color contest to give symbolism to our members’ struggles. Participation in the vote was indicative of the passion and commitment those touched by anal cancer possess. These colors are now sported around the country as an emblem of triumph and unity!
Leading the Charge to Establish Screening Protocols
We led a coalition of organizations that urged the National Institutes of Health to fund the first anal pre-cancer randomized controlled trial. The study will test anal cancer screening and treatment methods and is currently under consideration at the NIH. Identifying successful screening and treatment methods is a monumental step in eradicating anal cancer.
Developing Organizational Capacity
We made critical investments in our infrastructure:
• In January, 2013, the foundation moved to its first office space in New York City!
• Our team added two new staff members, Justine Almada and Ellie De Nardo. Justine, a co-founder of the foundation, became Executive Director in January and Ellie is our Communications and Administrative Coordinator in the UK. Patrick Aitcheson joined the team to design and develop a peer program to provide support to patients with anal cancer. A Summer Fellow, Kassandra Samman, M.A., joined our ranks for the summer.
• We welcomed two new board members, Jesper Bo Hansen and William Schoneman, both of whom have been personally affected by anal cancer, and two leading scientists from Great Britain, Dr. Margaret Stanley and Dr. Paul Fox, to our Scientific Advisory Board.
LOOKING TO THE FUTURE
With your support, the Anal Cancer Foundation will be able to help fund the following:
• HPVTrialFinder.org - A platform to match patients and clinical trials. This initiative would result in faster decisions concerning the availability of certain drugs. Funding needed: $200,000.
• Investigator Seed Grants - Provide researchers with the incentive and ability to test hypotheses and collect data regarding HPV-related cancer. This will garner larger, sustained funding sources. Funding needed: $200,000.
• FDA Drug Repurposing - Test the anal cancer lines we develop against previously approved compounds. Funding needed: $200,000.
• Cell Line Prize - Scientists have made clear to us they need cell lines as a first step to find better drugs for anal cancer patients. No anal cancer cell lines exist. This competition would develop immortal anal cancer lines. Funding needed: $200,000.
• HPVAction.org - An advocacy platform for gender-neutral vaccination. Funding needed: $40,000 (initial cost).
• Patient Support Services - The isolation and stigma associated with anal cancer is unique, and few survivors ever meet or speak with someone else who has experienced the disease. The peer support program gives thrivers a person to listen, offer support, and share experiences. Funding needed: $50,000.
WITH GRATITUDE
Thanks to you we are building the foundation for a community and a cure. We thank you in advance for your support!
