2020 Annual Report by AIM at Melanoma Foundation

2020 I MPACT REPORT

WE AIM TO END M ELANOM A ? w h ile im pr ovin g t h e lives of t h ose it af f ect s.

WHAT WE DO We direct, manage and fund COLLABORATIVE RESEARCH INITIATIVES, on a national and global scale. Our initiatives are innovative. We ask the world?s leading melanoma researchers what they need? what?s missing in the fight? and listen when they respond.

We speak on behalf of melanoma patients and families through our work in LEGISLATION, POLICY, AND ADVOCACY. The invited presence of our staff on numerous boards and committees that directly affect patients is one indication of our leadership in the world of melanoma.

The breadth, depth, and number of our EDUCATION AND SUPPORT resources for the melanoma community are second to none. Whether you?re a patient, survivor, caregiver, family member, nurse, physician, or researcher, we have so much to offer.

LETTER FROM THE PRESIDENT

What an unusual time! The year 2020 began like any other? and then COVID hit, and so much changed in the world, including the world of melanoma. Here at AIM we continued our work but we also pivoted to provide resources for patients and healthcare professionals to navigate diagnoses and treatment during COVID. In this report, we describe three highlights of the year? one from each of the areas of our mission. Without you, these success stories could not be told. Thank you for supporting our mission.

Samantha Guild, President AIM at Melanoma Foundation

2020 a m ost u n u su al year We continued to fight melanoma while the world battled COVID

"A biobank of fresh frozen primary melanoma tissues is truly the pot of gold for research. Critical information is available in the primary tumor? information we cannot get in metastasized tumors, such as predictive and prognostic factors. And when primary tumors are fresh frozen, RNA is intact, and the cell?s immune response is visible. This bank will be a treasure trove for researchers." ? Sancy Leachman, M.D., Ph.D., Chair, Department of Dermatology and Director, Melanoma Research Program, Oregon Health & Science University Knight Cancer Institute, and principal investigator for the tissue bank site at OHSU

SUCCESS

COLLABORATIVE RESEARCH INITIATIVES THE INTERNATIONAL MELANOMA TISSUE BANK CONSORTIUM (IMTBC)

AIM ?s f ou r t h t issu e ban k sit e w as appr oved at Nor t h w est er n Un iver sit y, Ch icago

The principal investigator for the Northwestern site of the tissue bank is Jeffrey D. Wayne, MD, FACS, Professor of Surgery and Dermatology, and Chief of the Division of Surgical Oncology, at the Northwestern University Feinberg School of Medicine. Dr. Wayne also serves as the Associate Director for Clinical Affairs of the Robert H. Lurie Comprehensive Cancer Center. He is Chair of the Cancer Committee of Northwestern Memorial Hospital. Dr. Wayne sits on the editorial boards of American Journal of Clinical Oncology and the Journal of Surgical Oncology. In melanoma, Dr. Wayne?s research is primarily focused on using immunotherapy before (neoadjuvant therapy) or after surgery (adjuvant therapy). He is especially interested in tailoring the need for specific surgical procedures, such as sentinel node biopsy and lymph node dissection, to an individual patient?s tumor biology. With respect to the tissue bank, his interest and research will be related to expanding the use of gene expression profile testing in melanoma. We?re excited to have Northwestern join our other three open sites: Oregon Health & Science University, Portland; University of Pittsburgh Medical Center, Pittsburgh; and California Pacific Medical Center, San Francisco. We are also excited to see what research Dr. Wayne and the team at Northwestern will do with this ?treasure trove? of tissue.

As of 2020, 22 states and the District of Columbia have passed some version of an indoor tanning ban for minors under 18. AIM works tirelessly to advocate for these state bans, and we won?t rest until all 50 states have one. This area of work is one with great collaboration: AIM partners with national organizations such as ACS CAN (American Cancer Society Cancer Action Network), local medical organizations such as state dermatology, nursing, and physician assistant groups, and melanoma patients and families to push legislators to introduce and adopt these laws that can save so many lives. In some states we are leading the charge; in others we are one of many. But in all states we are involved. The work is slow: First comes the education of one or more legislators. Each bill needs an author? a legislator who will champion the bill. AIM seeks to find that legislator and works with volunteers to tell their melanoma stories so that the legislator can point to real people the bill can or would have helped. Once the bill is introduced, it advances step by step after votes through committee work, the floor of one house, and then the other. Ultimately, the bill reaches the governor ?s desk hopefully for his/her signature. Each vote is an opportunity to be involved in advocating for the bill, and AIM and our fellow collaborators are involved as much as we can be. Many bills are introduced and then fail. While we?d like each state to introduce a bill and pass it quickly, the reality of politics is much different. Things move slowly. So we?re encouraged even when baby steps occur? even when a bill is introduced and never makes it out of committee, or passed in one house and voted down in another. Generally, it takes time for legislators to decide to outlaw anything, so baby steps are progress toward our ultimate goal. We?ll take slow progress over no progress, yet we?ll push for the fastest progress we can get! 2020 was an especially busy year, with 13 indoor tanning bills introduced around the country. On March 23, 2020, Virginia Governor Ralph Northam approved HB 38, which became effective July 1, 2020. It became the 20th state to completely ban minors under 18 from commercial indoor tanning devices and the 22nd state to pass some form of ban for minors under 18 (Washington and Oregon have a ban with a prescription exception). Hooray! Utah introduced HB 34 in 2020. Versions of this bill had been introduced a few times in the Utah legislature and failed to pass. In years past, Rep. Brad Daw vigorously opposed this bill. After speaking with AIM and individuals in the medical community at AIM?s suggestion, Daw became the author of this bill because he recognized there was no good reason to allow adolescents to use tanning devices. The bill initially died on the House floor. But we mobilized efforts and were able to bring it back for vote, changed the vote of several legislators who first voted against it, and ultimately got enough support to pass the House vote. Unfortunately, due to a short legislative session, there wasn?t enough time for it to be considered by the Senate. But this process demonstrates two important things: that education and advocacy with elected representatives works, and there is widespread interest in Utah in protecting minors from these dangerous devices. In Utah, AIM worked with ACS CAN and The Utah Academy of Physician Assistants, as well as with ESPN reporter and commentator Holly Rowe, a native of Utah and a melanoma survivor. We also received a lot of support from the Utah patient and medical community. We w ill con t in u e t h e f igh t f or pr ogr ess in 2021!

13 in door t an n in g bills w er e in t r odu ced in 2020

SUCCESS

LEGISLATION, POLICY & ADVOCACY

EDUCATION AND SUPPORT

SUCCESS

Th e lau n ch of t h e com plet ely r edesign ed AIM at M elan om a w ebsit e

September 18, 2020 was a big day for AIM? the official launch of our new website. Two years in the making, the site was reconstructed from the ground up with a revamped look and feel, revised and additional content, and redesigned navigation. AIM?s website is the most comprehensive melanoma resource available to patients, families, and caregivers, but we know the information is only useful if it can be easily accessed and searched. The new website has a sitewide consistent navigation system to make it easier to find information. Those newly diagnosed, those living with melanoma, and those beyond treatment will all find valuable information throughout the site. We expanded our Melanoma Learning Center to include a video library and downloadable materials, and we added more resources for patients and caregivers alike. We added information on prevention and early detection, and we expanded our already-thorough explanation pages for each stage of melanoma. As would be expected, the content is comprehensive and accurate, but also written so patients can understand it. New features on the site include integrated social media buttons for Facebook and Twitter, a live chat system to foster improved communication, and easy navigation to our pages for Steps Against Melanoma walks and our Living With Melanoma Symposiums. New? and requested? pages on the site include Fundraising 101 (?how-to?for those interested in helping AIM), Palliative Care (information on this critical need for many melanoma patients), and Educational Materials (free and easy downloads, as well as some printed/mailed by request)? among many, many other new pages. Our most visited pages are updated and improved, including the pages about our Research projects; Stages of Melanoma; Types of Melanoma; Memorial Tributes; and Survivor Stories.

How AIM at M elan om a Uses Fu n ds

THANK YOU AIM at Melanoma?s goal is to end this disease in our lifetime while improving the lives of those it affects, and we are able to pursue this goal because of our supporters?generosity. We are committed to sound financial practices, transparency, and accountability, all of which are critical to attracting and keeping the generous funding that allows us to fulfill our mission. Thank you for your support and your trust.

2020

HOWWILL 2021 FINISH? Wh at w ill w e an n ou n ce as accom plish m en t s in t h e n ext an n u al r epor t ?

An exciting number of fresh frozen primary tissues collected Advocacy that successfully changed an insurer ?s step therapy requirement to a more patient-centric policy An expansion of our resources to address the psychosocial aspects of a melanoma diagnosis

In addition to our generous donors, thank you to our Board of Directors and our Advisory Board. Together we can end melanoma.

/ / AIM at M elan om a.or g