AIM AT MELANOMA
3040 CUTTING BLVD, RICHMOND, CA 94804 www.aimatmelanoma.org

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Organizations Filed Purposes: AIM AT MELANOMA IS GLOBALLY ENGAGED AND LOCALLY INVESTED IN ADVANCING THE BATTLE AGAINST MELANOMA THROUGH INNOVATIVE RESEARCH, LEGISLATIVE REFORM, EDUCATION, AND PATIENT AND CAREGIVER SUPPORT. FOUNDED IN 2004, AIM AT MELANOMA IS THE LARGEST INTERNATIONAL MELANOMA FOUNDATION SEEKING THE CURE FOR MELANOMA. WE BELIEVE THAT THE CURE FOR MELANOMA WILL BE FOUND MORE QUICKLY BY BRINGING TOGETHER LEADING GLOBAL RESEARCHERS AND FUNDING THEIR COLLABORATIVE RESEARCH. OUR THREE PARADIGM-SHIFTING GLOBAL RESEARCH INITIATIVES, INCLUDING THE MELANOMA TISSUE BANK CONSORTIUM, ARE POISED TO RESHAPE THE FUTURE OF MELANOMA. WE ARE THE RESPECTED VOICE OF MELANOMA ACROSS THE NATION. WHEN DRUGS ARE APPROVED, LEGISLATION IS DRAFTED, AND RESEARCH IS ASSESSED, AIM IS AT THE TABLE, SPEAKING LOUDLY AND CLEARLY ON BEHALF OF PATIENTS AND THEIR FAMILIES. WE ARE TRUSTED ADVISORS FOR PHARMACEUTICAL COMPANIES, MEDICAL BOARDS, AND GOVERNMENT AGENCIES ON CRITICAL TOPICS THAT AFFECT MELANOMA PATIENTS.

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 2016, AIM COMPLETED BUILDING ITS NEW WEBSITE 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, AND UNDERSTANDING FOLLOW-UP CARE. 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 AND WITH CONTENT RELATED TO ISSUES FACING THE MELANOMA COMMUNITY. THE U.S. WEBSITE ALONE, HAD MORE THAN 63,000 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 CANCERS SUCH AS UPMC, HUNTSMAN CANCER INSTITUTE, YALE CANCER CENTER AND OHSU. 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 THROUGHOUT THE U.S. AND 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 25,000 FOLLOWERS, A TWITTER ACCOUNT OF OVER 7,400 FOLLOWERS AND AN INSTAGRAM ACCOUNT OF OVER 1,700 FOLLOWERS IN ORDER TO PROVIDE OTHER SOURCES OF INFORMATION FOR THE MELANOMA COMMUNITY.AIM CONTINUED TO REPRESENT PATIENTS ON THE U.S. FDA ODAK COMMITTEE, THE TWO LARGEST U.S. COOPERATIVE ONCOLOGY GROUPS, SWOG AND ECOG, THE NCCN, THE AAD GUIDELINES COMMITTEE, THE ASCO GUIDELINES COMMITTEE AND THE MELANOMA WORLD SOCIETY. AIM ALSO PRESENTS ON THE MELANOMA PATIENT PERSPECTIVE AT NUMEROUS MEETINGS BOTH IN THE U.S. AND THROUGHOUT THE WORLD. TO HELP PATIENTS UNDERSTAND THEIR DISEASE, THE OPTIONS AVAILABLE, AND HOW TO WEIGH THOSE OPTIONS WITH THEIR ONCOLOGY TEAM, AIM CREATED A 6-PAGE GUIDE AND 15 VIDEOS FOR PATIENTS ON THE ROLE OF BRAF IN MELANOMA, WHAT BRAF MUTATIONAL STATUS MEANS, TESTING FOR BRAF, AND THE IMPLICATIONS OF THE TEST RESULTS FOR TREATMENT PLANNING. THESE RESOURCES ARE ON THE AIM WEBSITE AND ARE HARED BY MAJOR ACADEMIC CENTERS THROUGHOUT THE U.S. (HTTPS://WWW.AIMATMELANOMA.ORG/DIAGNOSING-MELANOMA/BRAF-IN-MELANOMA-ANSWERING-QUESTIONS-ADDRESSING-MISCONCEPTIONS/}.GLOBAL ADVOCACYAIM'S PATIENT ADVOCACY WAS A GLOBAL EFFORT. AIM CONTINUED TO HOST COUNTRY SPECIFIC, FULLY TRANSLATED MELANOMA WEBSITES IN GERMANY, FRANCE, UNITED KINGDOM, SPAIN, ITALY, AND AUSTRALIA. IN 2019, AIM SUPPORTED AND MENTORED PATIENT ADVOCACY GROUPS IN THE UNITED KINGDOM, PORTUGAL, GERMANY, FRANCE, ITALY, SPAIN, ISRAEL, LATIN AMERICA, BRAZIL AND EASTERN EUROPE. AIM ALSO BEGAN ITS SUPPORT AND MENTORING OF ADDITIONAL PATIENT ADVOCACY GROUPS IN AUSTRALIA. AIM MADE IT POSSIBLE FOR THE PATIENT ADVOCATES TO ATTEND INTERNATIONAL MELANOMA MEETINGS WHERE THEY MET WITH KEY OPINION LEADERS IN THE MELANOMA COMMUNITY, 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 SIDE EFFECT MANAGEMENT SHEETS ON THE VARIOUS MELANOMA THERAPIES. AIM HOLDS A YEARLY MEETING IN MUNICH GERMANY 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.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 IN APRIL AND SEPTEMBER OF 2019. AMONG ITS ACCOMPLISHMENTS IN 2019, 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.CONTINUED IN SCHEDULE O AND ADDITIONAL INFORMATION CONTINUED IN ACCOMPLISHMENTS TWO

CONTINUED FROM ACCOMPLISHMENTS ONE IN SCHEDULE ONURSE/PHYSICIAN EDUCATION INITIATIVEIN OCTOBER 2016 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 THERAPIES7-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 IMMUNOTHERAPYARTICLES ARE MADE AVAILABLE THROUGH OPEN ACCESS LOCATED ON OUR PORTAL4. JADPRO SUPPLEMENT ON THE MANAGEMENT OF IMMUNE RELATED ADVERSE EVENTSTHIS 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 WEBSITE5. DEVELOPMENT OF PATIENT RESOURCE MATERIALSCUSTOMIZED PATIENT RESOURCE/EDUCATION MATERIALS (PRINTABLE PDFS) HAVE BEEN DEVELOPED THAT CAN BE DOWNLOADABLE FROM THE WEBSITE AND DISTRIBUTED BY NURSES/PHYSICIAN ASSISTANTS AND OTHER HCPSTOPICS 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.6. DEVELOPMENT OF PATIENT AND HCP VIDEOSVIDEOS HAVE BEEN DEVELOPED TO ADDRESS THE ISSUES OF SIDE EFFECTS BOTH FOR TARGETED AND IMMUNOTHERAPY AGENTS. THESE VIDEOS ARE BOTH FOR PATIENTS AND HEALTH CARE PROVIDERS. THE HCP VIDEOS ARE AVAILABLE ON THE MNI SITE AND THE PATIENT VIDEOS ARE AVAILABLE ON THE AIM AT MELANOMA SITE.

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