Welcome to the first edition of our quarterly newsletter!
We hope to hear from you, our community, about what you want to see in this newsletter as well as what you want to see from us. Your voices shape our work, which is laser-focused on supporting those with anal cancer and their loved ones, and ending this preventable cancer.
We designed this to provide you with resources as well as keeping you updated on how we at the HPV and Anal Cancer Foundation are working to end anal cancer. We’ll be covering it all: advances in research, resources for individuals during and after treatment, peer-to-peer support, raising awareness in international, national and local communities, and so much more!
Please contact us with your feedback and ideas for how we can better provide you with resources and support! If you want to get our newsletters straight to your inbox along with the latest news from the anal cancer community, you can sign up for our newsletter!
Justine, Tristan and Camille Almada
Taking Care of Anal Cancer Thrivers
We have created and curated multiple resources for the anal cancer community and their loved ones. We’ll be highlighting these in each of our emails but as a start, here are some of our favorites:
Do you know about our Peer-to-Peer Support Program? P2P is a free service provided by our Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers. Our volunteers have experienced anal cancer first-hand and are available to listen and help thrivers through their cancer journey by sharing their own experiences. You can sign up or find out more about the program through this link!
We know so well how difficult side effects of anal cancer treatment can be, which is why we dedicate a good portion of our website to helping address their management on our Living With the Side Effects pages.
In addition, we post resources from our forums and medical experts, including this presentation from Memorial Sloan Kettering’s Dr. Jeanne Carter on dealing with Long Term Side Effects After Treatment with information for thrivers as well as their providers. Similarly, our guest blog series by Dr. Allison Palandrani on How Physical Therapy Can Help with Recovery gives a detailed explanation of how and why physical therapy can be of assistance to anal cancer patients.
Please let us know what resources would be most helpful to you, whether you are a new thriver, have been out of treatment for years, or are a caregiver to a loved one with anal cancer.
Cancer Prevention Advocacy: A 2017 NOMAN & HPV-Associated Thriver Speaks!
This issue, we’re highlighting one of our 2017 NOMEN Steve Bergman (above!), who in addition to participating in our grueling 200-mile ocean rowing race, has been a dedicated advocate of protecting boys against HPV in the UK. Steve was diagnosed in May 2015 with squamous HPV-associated throat cancer. HPV is, as we know, the main carcinogen responsible for anal cancer.
Steve’s diagnosis was followed by a massive operation accompanied by extensive chemotherapy and radiotherapy. His treatments lasted for seven months and was followed by a slow and difficult recovery.
Since recovering, Steve has involved himself in a multitude of advocacy work, all surrounding the cancer-causing HPV virus. He worked on a film promoting the vaccination of boys against HPV, served as a keynote speaker at the Swallow Head and Neck Cancer conference, presented the “patient view” to Bart’s Cancer consultants and spoke about his experience on the Victoria Derbyshire show.
Most recently, Steve took on the extreme physical endurance challenge of participating in the Foundation’s NOMAN 2017 Race from Ibiza to Barcelona. “Doing the rowing challenge did not come close to what I went through when I was diagnosed with cancer and then having chemo and radiotherapy treatment”, said Steve of his story. “The row was grueling and harsh but it was an awesome experience. The metaphor is obvious; there was nowhere to hide and I just had to get on with it. The team was fantastic and it didn’t matter that I had cancer. I had to do my bit.”
Thank you, Steve, for sharing your incredible story and for helping us spread the word about the life-saving HPV vaccine! Learn more about the campaign at nomancampaign.org.
Do you have an anal cancer story to share with us? Contact us!
Preventing Cancer for the Next Generation
Did you know? HPV causes over 90% of anal cancer cases, and 5% of all cancers worldwide. Find out more.
We’re certain that we can eradicate anal cancer for good through screening and immunization. As many parents vaccinate their children in late summer/early fall, now is the perfect time to use your voice and personal experience to share with others how HPV is vaccine-preventable.
To protect children against facing infection with the virus, the CDC recommends that all 11 – 12 year old children receive the HPV vaccine with a series of shots. The HPV vaccine is another tool in the toolbox for parents to reduce their child’s risk of developing cancer, along with other interventions like the hepatitis B vaccine, sunblock, diet and exercise.
Take charge of your health and seize the opportunity to talk with people in your community on the importance of this life-saving vaccine!
Summer Updates: HPVACF Recognized For Efforts to End Cancer
We’ve been busy! In June, the Foundation was graciously nominated by a thriver to be honored at Mass General’s annual One Hundred gala – an evening celebrating game-changers in the cancer community. The award recognition wrote that the Foundation has “an ambitious vision: develop new cures for and eliminate this cancer and its cause…Over the last seven years, the HPV and Anal Cancer Foundation has acheived key milestones towards eradicating anal cancer and supporting patients.” Alongside other nonprofits, researchers, medical professionals and survivors, we celebrated the awesome and important work we all are doing to eradicate cancer. Thank you very much to the thriver who nominated the organization, and to all of you for your contributions to build our community and to find a cure.
Also in June we were featured on the BBC for our UK advocacy work to urge equal access to HPV protection for both boys and girls. Until boys are able to get the HPV vaccine, British children will not be fully protected from this cancer-causing virus. Tristan Almada, HPVACF co-founder, appeared on several news programs to make the case. Unfortunately the decision making body, the UK Joint Committee on Vaccination and Immunisation (JCVI) delayed a final decision on whether to vaccinate boys, opting to undertake a consultation period in August which HPVACF submitted testimony to. We continue to get louder and prouder in our calls for what is right ahead of a potential final decision in November.
Our NOMAN is an Island races took place this summer and were a smashing success. The NOMAN campaign challenges individuals to extreme endurance events to raise awareness of the connection between HPV and 5% of all cancers, and how we can prevent the majority of HPV-related cancers simply by vaccinating boys and girls against this devastating virus. Watch highlights here and THANK YOU to everyone who participated and contributed!
Until next time: thrive on!