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Melanoma Action Coalition 4th Annual Meeting

Join us for the MAC's fourth annual meeting at The Ritz-Carlton Hotel in Washington, D.C. on February 25, 2019. Learn about our progress in 2018, priorities for this year, and engage in open sharing sessions. Explore our accomplishments, partnerships, and future initiatives.

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Melanoma Action Coalition 4th Annual Meeting

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  1. Melanoma Action Coalition Fourth Annual Meeting The Ritz-Carlton Hotel Washington, D.C. February 25, 2019

  2. Today’s agenda • Welcome and introductions • An update on MAC's progress in 2018 • This year’s priorities • Open sharing

  3. Introductions • Your name • Your organization’s name (if that applies) • The state you are from

  4. 2018: a year of expansion

  5. 2018 accomplishments Governance • Adopted formal by-laws • Formed a Board of Directors • Became an official 501(c)(3) in May, 2018 • In the process of completing state registrations, sales tax exemption applications

  6. 2018 accomplishments Membership • Nearly 100 percent renewal of dues-paying members in 2018 • Continued to expand membership

  7. New members 2018 • Brown Skin Too Foundation, DE • A Cure in Sight, NC • Jack H. Marston II Melanoma Fund, IL • Miggy’s Gift Melanoma Awareness, FL • Pull the Plug on Tanning Beds, TX • Stage Free Melanoma, CA • Eight new individual advocates

  8. 2018 accomplishments Meetings • Third annual meeting February 2018 • Fall conference • Supported by $5,000 grant from Novartis and a $6,000 grant from Bristol Myers-Squibb • Additional sponsorship from Myriad Genetics • Presentations by prominent Philadelphia-area melanoma specialists • Support and participation from MRA • Attended by MAC members and Philadelphia-area melanoma advocates

  9. 2018 accomplishments Communication • Website • Social media following growing rapidly: • Facebook: 475+ followers • Twitter: 1,400+ followers • Instagram: 725+ followers • Facebook members’ group • Newsletter • Outreach to new members

  10. 2018 accomplishments Speaking out together Awareness: • Today Show Melanoma Monday in NYC, organized by Defeat Melanoma • Publicity for national Don’t Fry Day • SunSavvy365: joint campaign with MRA

  11. 2018 accomplishments Speaking out together Advocacy: • Support for tanning bed restrictions at the state level • Endorser of SUNucate model legislation removing barriers to sunscreen use in schools at the state level • Established a Political Advocacy committee

  12. 2018 accomplishments Partnerships • Melanoma Research Alliance • AIM at Melanoma • Imerman Angels • ACS-CAN: connections at both national and state levels • American Society for Dermatologic Surgery Assn.( SUNucate initiative) • Natl. Council on Skin Cancer Prevention (Don’t Fry Day) • Antidote: Clinical Trial Navigator

  13. 2018 accomplishments Sponsorships Developed an impact statement for use with potential corporate funders and sponsors. • Novartis • Bristol Myers-Squibb • Myriad Genetics • MDSolarSciences • Coolibar

  14. 2018 Financials • Income: $15,542 • Dues: $1,337 • Corporate contributions: $14,000 • Miscellaneous contributions: $205 • Expenses: $17,099 • Legal fees: $3,685 (incorporation /501(c)(3)) • Insurance: $1,808 • Operations: $648 (postage, printing, supplies, etc.) • Meetings: $10,540 • Travel: $274 • Meals and entertainment: $144

  15. 2019: a time to consolidate…

  16. 2019 initiatives and goals • Board of Directors: have had some people leave and have decided to remain smaller for a time • Who are we?: • What are our core mission and values? • What strengths and resources do our members bring to us? What do they value in us? • What are our priorities? • What can we do collectively better than individually? • What is better left to individual foundations and advocates? • What is the role of fundraising at the coalition level? • How much focus do we put on fundraising? • For what purpose?

  17. 2019 initiatives and goals Consultant to help us answer these questions: • Paid for with part of funds from MD SolarSciences • MRA helped us prepare an RFP • Interviewing candidates tomorrow • Will be contacting members via online survey and phone • Work expected to take place for a good portion of this year • Decisions about collaborative grants on hold until work is complete

  18. 2019: …but the work goes on

  19. 2019 initiatives Fall conference Duke University October 11 and 12, 2019

  20. 2019 initiatives Patient Advocacy • Established a partnership with Imerman Angels, an organization that provides mentors to those dealing with cancer and to their caregivers. • Launched partnership in January. • Looking for mentors from among our members as a first step. • After your foundation has at least one mentor, help spread the word to patients and caregivers via your website, newsletters,and social media.

  21. 2019 initiatives Public Policy • Endorsed policy brief written by the Society for Behavioral Medicine in support of the SUNucate initiative. • Will participate in Melanoma Research Foundation’s Advocacy Summit and Hill Day for the first time: March 9-11, 2019 Washington, D.C. All members welcome to join in!

  22. 2019 initiatives SunSavvy365 • Will continue to explore ways of using the SunSavvy365 name and logo to raise awareness. • Have begun the process of registering and trademarking the SunSavvy365 name and logo. • Assuming the trademarks are granted, we will consider whether to pursue licensing agreements with companies manufacturing/selling sunscreen and sun protective clothing.

  23. 2019 initiatives Partners and sponsors Melanoma Research Alliance • Our “go to” partner • Provides us with advice, encouragement, and good counsel • Space for this meeting • Continuing collaboration in the area of awareness

  24. 2019 initiatives Partners and sponsors Bristol-Myers Squibb Fee for Services partnership • Statement of work has just been finalized • MAC and participating members will participate in consulting sessions, and help spread the word about BMS clinical trials via websites, newsletters, and social media • MAC can earn up to $10,000 for these services, depending on how much we do • Participating members will share proceeds Have also spoken to Novartis about possible grant and partnership possibilities.

  25. 2019 initiatives Partners and sponsors AIM at Melanoma • Brochure: “Everything you Need to Know about your Skin Exam” • Brochure will be available for distribution to all members • Will be exploring other ways of working together

  26. 2019 initiatives Partners and sponsors Coolibar • Coolibar is planning a series of blog posts highlighting MAC • Possibility of additional partnership opportunities

  27. 2019 initiatives Partners and sponsors MD Solar Sciences Don Uselmann

  28. 2019 initiatives How you can help • Join a committee • Help us spread the word: • Include our logo on your web site • Follow us on social media • Share and retweet our posts • Share your news and resources with us • Join in initiatives with our partner organizations • Keep in touch: we welcome your questions, ideas, and feedback

  29. 2019 initiatives Questions?

  30. Your Turn Share your 2018 accomplishments and 2019 goals

  31. Thank you!! Melanoma Research Alliance and All of you!

  32. Keep in touch Website: • www.melanomaactioncoalition.org • Facebook: • www.facebook.com/melanomaaction/ • Twitter: • @MelanomaAction • Instagram: • Melanomaaction • Email: • contact@melanomaactioncoalition.org

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