Aim at Melanoma

Websiteaim at Melanoma ("Aim") is an international organization engaged in a wide range of patient advocacy initiatives for the purpose of raising awareness about Melanoma and to support those affected by the disease. Among these is the maintenance of the most comprehensive u.s. website on Melanoma (www.aimatmelanoma.org). In 2023, Aim continued to add additional content so it would better be able to meet the needs of the Melanoma community. This included making it easier for users to locate pertinent information to assist them in better understanding their Melanoma diagnosis and staging, treatment options, clinical trial opportunities, management of side effects of treatment, risk of recurrence, follow-up care, and the psychosocial aspects of the disease. The organization continued to use various tools such as search engine optimization, social media, and brochures distributed to healthcare providers throughout the u.s. to educate Melanoma patients about the website's resources. The website was also updated regularly for medical accuracy in order to reflect the current standard of care in Melanoma and with content related to issues facing the Melanoma community. The u.s. website alone had more than 70,000 unique visitors each month. This is an increase from 2022.patient advocacyaim continued to provide a free oncology physician assistant on call service through its ask an expert initiative. Throughout the year, Melanoma patients, caregivers, and families reached out to ask questions about, among other things, their/ their loved one's Melanoma diagnosis, treatment options, clinical trials, side effect management, and follow-up care as well as questions regarding prevention and early detection of the disease. Aim also coordinated numerous patient advocacy events, which included 10 patient and caregiver symposia led by nationally recognized Melanoma oncologists at major cancer centers such as moffitt cancer center, the angeles clinic & research institute, uw carbone cancer center, and dana-farber cancer institute. The symposia are offered as in-person events and are also live streamed globally. Aim also videotaped and edited these symposiums, which were then uploaded onto youtube and Aim's website so they could be viewed by individuals in the u.s. and worldwide at any time. Aim continued to provide support for patients, families, and survivors through a program called peer connect. Peer connect is a peer-to-peer support program, Aim at Melanoma's answer to the ongoing need for support in the Melanoma community. Melanoma patients, family members, and caregivers who join the program are matched with a peer, and from there the pair communicate in a way that is comfortable for both. Members of peer connect provide each other with knowledge, experience, emotional support, and more. In 2023, Aim increased the number of individuals who participated in the program by 50%. Aim maintained a facebook page, which now has over 29,000 followers, a twitter account of over 7,850 followers and an instagram account of over 6,000 followers in order to provide other sources of information for the Melanoma community.aim continued to represent patients on the two largest u.s. Cooperative oncology groups, swog and ecog, the nccn, and the asco guidelines committee. Aim also presented on the Melanoma patient perspective at numerous meetings both in the u.s. and throughout the world. To help patients understand their disease, Aim continued to offer from the clinic to the living room, a webinar series that is live streamed through facebook and provides an in-depth discussion on a specific topic with a Melanoma specialist, such as a physician, researcher, or other medical expert. Aim also continued to offer beyond the clinic: living well with Melanoma, a podcast series to address the psychosocial aspects of a Melanoma diagnosis during and beyond treatment. Aim also continued to offer melanoma360 blog, which features survivor stories, research breakthroughs, current news, health living information etc.global advocacyaim's patient advocacy is a global effort. In 2023, Aim continued to support and mentor patient advocacy groups in the united kingdom, portugal, germany, france, italy, spain, israel, latin america, brazil, canada, australia, and eastern europe. Aim also welcomed a patient advocacy group from nigeria. Aim made it possible for the patient advocates to attend international Melanoma meetings, either in person or virtually, where they learned about the most up to data on Melanoma, and where they presented the patient perspective to relevant groups. Aim continued to assist in the development of some of their respective websites providing not only technical support but also material for the sites, which included a series of videos discussing sequencing of therapies in stage iv Melanoma and stage ii Melanoma treatment options. Aim held its yearly in person meeting for global patient advocates in order to help them learn more about Melanoma advancements as well as how to use social media to educate patients and caregivers. Aim also virtually met with global advocates to help promote collaborations on year-long projects, to provide each other feedback on individual regional projects, to share best practices, and to learn about results of clinical trials.imwgin april 2006, Aim formed the international Melanoma working group (imwg). The imwg is based on the premise that Melanoma requires a focused, multi-disciplinary effort among the world's leading Melanoma investigators in order to provide for a better understanding of the biology of Melanoma, to accelerate the quest for more effective therapies, and eventually to develop a cure for the disease. The imwg provides a think tank atmosphere for the world's leading Melanoma experts to gather away from large meetings. Since its inception, imwg has undertaken several key projects as a result of collaboration among its members and continues to work on additional efforts that will lead to the development of more effective treatment options for Melanoma patients. Imwg members, which consist of Melanoma experts from throughout the world, met in person in the spring 2023 and the fall of 2023. Among its accomplishments in 2023, the iwmg continued to work on its international clinical trial network. Aim has opened an international Melanoma tissue bank of annotated fresh frozen primary Melanoma tissue at Oregon health & science university's knight cancer institute, California pacific medical center, northwestern university's robert h. lurie comprehensive cancer center, university of pittsburgh cancer institute; the peter maccallum cancer center and alfred hospital in melbourne are signed on to participate but haven't begun collecting tissue. The tissue bank is the fundamental research tool that does not exist yet for public or private research. Major advances, particularly within breast and prostate cancer, resulted from similar banks. Consequently, Melanoma research lags significantly behind the progress that has been made in other cancer research. In 2023, the bank collected a total of 77 tissues from all 4 u.s. sites and continued its effort to start collecting tissue at its australian sites.wimin august 2017, Aim formed women in Melanoma (wim). With a growing number of young women oncologists with an interest in Melanoma, and Aim's proven track record for bringing together Melanoma experts, Aim formed wim for the purpose of supporting the improvement of Melanoma patient outcomes through a focus on strengthening the physician-patient relationship, providing insights into best practices in communicating with patients with Melanoma to improve outcome, supporting the academic careers of young women with a research interest in Melanoma, and fostering mentoring relationships among women oncologists working in the field of Melanoma. In 2023, Aim held its seventh annual meeting in leesburg, va which was attended by up-and-coming women oncologists, with a focus on Melanoma. Since its inception, wim members have since undertaken key research projects as a result of collaboration among its members at wim meetings.

Continued line 4a from schedule onurse/physician education initiativein october 2016 Aim created the Melanoma nursing initiative (mni). The recent expansion of Melanoma therapy has increased the complexity of disease management. Patients may discontinue therapy if not adequately engaged in their own care or supported when they experience side effects. As well, more patients are being treated in the community setting, where expertise is frequently lacking to address these challenges. The mni consists of:1. Melanoma nurse resource center portal (themelanomanurse.org)this portal provides a 1-stop shop for all the educational materials developedcontent includes consensus statements, side-effect search functions, cne activities, a supportive care q/a portal, and a patient resource center.2. Melanoma nurse management toolkithelpful resources such as algorithms, checklists, printable sheets, and searchable content on supportive care aspects of Melanoma therapy (side effect management as well as adherence issues), key resources on targeted therapy, immunotherapy, and intralesional immunotherapy online resources as well as print pieces for distribution at regional cancer meeting.3. Cjon (ons) supplement on optimizing outcomes for Melanoma therapies 7-article supplement in cjon to include an introduction by 2 Melanoma physicians, an overview document from our chair, and 5 articles on support strategies for targeted therapy, immunotherapy, and intralesional immunotherapy articles are made available through open access located on our portal.4. Jadpro supplement on the management of immune related adverse events this 4-article supplement in jadpro covers immuno-oncology therapy essentials: proactive management of immune-related adverse events. Both the cjon and jadpro supplements are available as well on the mni website.5. Jco oncology practice on interdisciplinary care for management of complex iraes. The articles in the supplement covers immuno-oncology applications in clinical scenariosintroduction, toxicity management of front-line pembrolizumab combined with axitinib in clear cell metastatic renal cell carcinoma: a case study approach, management of pneumonitis and neuropathy in patients receiving pd-1based therapy for nonsmall-cell lung cancer, the management of immune-related dermatitis and mucositis associated with pembrolizumab in metastatic human papillomavirusassociated squamous cell carcinoma of the oropharynx, and atypical presentations and management of endocrine and hepatic immune-related adverse events from adjuvant immune checkpoint inhibitor therapy in stage iii resected Melanoma. The jco supplement are available as well on the mni website.6. Aim continued to provide an interactive, web based education on braf/mek inhibitor therapy for Melanoma to improve the outcomes through indisciplinary care. 7. Development of patient resource materials customized patient resource/education materials (printable pdfs) have been developed that can be downloadable from the website and distributed by nurses/physician assistants and other hcps. Topics include the goals of therapy, the side effects of therapies, important points/strategies around adherence, as well as other supportive resources, such as call-in numbers for financial or other assistance, etc. Specific content on targeted therapies, immunotherapies, combinations, intralesional immunotherapies, and the adjuvant setting are included.8. Development of patient and hcp videos have been developed to address the issues of prevention and early detection, surgery, pathology, treatment, side effects and managmenet for both targeted and immunotherapies, clinical trials, and living with Melanoma. The hcp videos were developed to assist hcps to care for patients during covid. The videos are available on Aim at Melanoma site's youtube channel.9. Aim provided web based education on strategies to support shared decision making in the stage ii setting. The education is available as well on the mni website.