Aim At Melanoma

TO SUPPORT MELANOMA RESEARCH; TO PROMOTE PREVENTION AND EDUCATION AMONG THE GENERAL PUBLIC AND MEDICAL PROFESSIONALS; AND TO PROVIDE COMPREHENSIVE AND EASILY ACCESSIBLE MELANOMA RESOURCES FOR PATIENTS, SURVIVORS, AND CAREGIVERS.

WEBSITEAIM AT MELANOMA ("AIM") IS AN INTERNATIONAL ORGANIZATION ENGAGED IN A WIDE VARIETY OF PATIENT ADVOCACY INITIATIVES. AMONG THESE IS THE MAINTENANCE OF THE MOST COMPREHENSIVE U.S. WEBSITE ON MELANOMA (WWW.AIMATMELANOMA.ORG). IN 2021, AIM CONTINUED TO ADD MORE 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, DETERMINING THEIR TREATMENT OPTIONS, MANAGE THE SIDE EFFECTS OF TREATMENT, UNDERSTANDING FOLLOW-UP CARE AND ADDRESS THE PSYCHOSOCIAL ASPECTS OF THE DISEASE. THE ORGANIZATION CONTINUES TO USE VARIOUS TOOLS SUCH AS SEARCH ENGINE OPTIMIZATION AND DISTRIBUTING BROCHURES TO HEALTHCARE PROVIDERS THROUGHOUT THE U.S. TO EDUCATE MELANOMA PATIENTS ABOUT THE WEBSITE'S RESOURCES. THE WEBSITE IS 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 64,000 UNIQUE VISITORS EACH MONTH.PATIENT ADVOCACYAIM PROVIDED A FREE PHYSICIAN ASSISTANT ON CALL SERVICE. THROUGHOUT THE YEAR, MELANOMA PATIENTS, CAREGIVERS, AND FAMILIES REACHED OUT TO AIM'S ONCOLOGY PHYSICIAN ASSISTANT TO ASK QUESTIONS ABOUT, AMONG OTHER THINGS, THEIR/OR THEIR LOVED ONE'S MELANOMA DIAGNOSIS, TREATMENT OPTIONS, AND FOLLOW-UP CARE AS WELL AS QUESTIONS REGARDING PREVENTION AND EARLY DETECTION OF THE DISEASE. AIM ALSO COORDINATED NUMEROUS PATIENT ADVOCACY EVENTS, WHICH INCLUDE 10 PATIENT AND CAREGIVER SYMPOSIA LED BY NATIONALLY RECOGNIZED MELANOMA ONCOLOGISTS AT MAJOR CANCER CENTERS SUCH AS UPMC, FOX CHASE CANCER CENTER, MOFFITT CANCER CENTER, NYU LANGONE AND T.W. LEWIS MELANOMA CENTER OF EXCELLENCE AT BANNER MD ANDERSON CANCER CENTER. THE EVENTS CONTINUED TO BE OFFERED ONLY IN VIRTUAL FORMAT DUE TO COVID. AIM ALSO VIDEOTAPED AND EDITED THESE SYMPOSIUMS, WHICH WERE THEN UPLOADED ONTO YOUTUBE AND AIM'S WEBSITE SO THAT THEY COULD BE VIEWED BY INDIVIDUALS IN THE U.S. AND WORLDWIDE. THESE SYMPOSIA WERE ALSO LIVE STREAMED GLOBALLY. AIM PROVIDES SUPPORT FOR PATIENTS, FAMILIES, AND SURVIVORS FOR 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.AIM MAINTAINED A FACEBOOK PAGE, WHICH NOW HAS OVER 25,500 FOLLOWERS, A TWITTER ACCOUNT OF OVER 7,700 FOLLOWERS AND AN INSTAGRAM ACCOUNT OF OVER 2,400 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, THE AAD GUIDELINES COMMITTEE, THE ASCO GUIDELINES COMMITTEE. AIM ALSO PRESENTS ON THE MELANOMA PATIENT PERSPECTIVE AT NUMEROUS MEETINGS BOTH IN THE U.S. AND THROUGHOUT THE WORLD, WHICH WAS IN A VIRTUAL FORMAT IN 2021. 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 TO PROVIDE 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 WEBINAR SERIES THAT IS LIVE STREAMED THROUGH FACEBOOK TO ADDRESS THE PSYCHOSOCIAL ASPECTS OF A MELANOMA DIAGNOSIS DURING COVID. AIM ALSO CREATED MELANOMA360 BLOG, WHICH FEATURES SURVIVOR STORIES, RESEARCH BREAKTHROUGHS, CURRENT NEWS, HEALTH LIVING INFORMATION ETC.GLOBAL ADVOCACYAIM'S PATIENT ADVOCACY IS A GLOBAL EFFORT. IN 2021, AIM CONTINUED TO SUPPORT AND MENTOR PATIENT ADVOCACY GROUPS IN THE UNITED KINGDOM, PORTUGAL, GERMANY, FRANCE, ITALY, SPAIN, ISRAEL, LATIN AMERICA, BRAZIL, CANADA, AND EASTERN EUROPE. AIM CONTINUED ITS SUPPORT AND MENTORING OF AN ADDITIONAL PATIENT ADVOCACY GROUP IN AUSTRALIA. AIM MADE IT POSSIBLE FOR THE PATIENT ADVOCATES TO VIRTUALLY ATTEND INTERNATIONAL MELANOMA MEETINGS 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 COVID-19 VACCINE RECOMMENDATIONS FOR IMMUNOTHERAPY PATIENTS. AIM CONTINUED TO HOLD ITS YEARLY MEETING VIRTUALLY, DUE TO COVID, 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 HELD BI-MONTHLY ZOOM TEAM MEETINGS FOR GLOBAL ADVOCATES TO ALLOW FOR THE ABILITY TO COLLABORATE ON YEAR-LONG PROJECTS, TO PROVIDE EACH OTHER FEEDBACK ON INDIVIDUAL REGIONAL PROJECTS, AND TO SHARE BEST PRACTICES AND LEARNINGS IN REAL TIME WITH EACH OTHER.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, THE 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 OVER FORTY MELANOMA EXPERTS FROM THROUGHOUT THE WORLD, MET VIRTUALLY IN THE SPRING AND FALL OF 2021. AMONG ITS ACCOMPLISHMENTS IN 2021, 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, AND THE PETER MACCALLUM CANCER CENTER IN MELBOURNE. 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 2021, THE BANK CONTINUED TO COLLECT TISSUE BUT HAD CHALLENGES IN REACHING ITS 2021 GOAL DUE TO COVID.CONTINUED IN SCHEDULE O AND ADDITIONAL INFORMATION CONTINUED IN ACCOMPLISHMENTS TWO

CONTINUED FROM ACCOMPLISHMENTS ONE IN SCHEDULE ONURSE/PHYSICIAN EDUCATION INITIATIVEIN OCTOBER 2016 AIM CREATED THE MELANOMA NURSE 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 (SEE GRAPHIC, 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 CENTER2. 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 IMMUNOTHERAPYONLINE RESOURCES AS WELL AS PRINT PIECES FOR DISTRIBUTION AT REGIONAL CANCER MEETING3. 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. THE EDUCATION IS AVAILABLE AS WELL ON THE MNI WEBSITE.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.