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Advocates are the Voice of the Melanoma Community
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From the desk of Advocacy Officer Kim Watkins:
Each day, the MRF strives to advance care and outcomes for melanoma patients across the world. Our advocacy program helps drive that mission by helping local, state and federal lawmakers understand the needs of the melanoma community.
A few weeks ago, melanoma advocates from 14 states gathered in Washington, DC to share their stories with lawmakers and advocate for melanoma research, increased access to telehealth, diversity in clinical trials and melanoma prevention. This annual event brings together patients, caregivers, survivors, thrivers and healthcare professionals across all melanoma subtypes to advance care for melanoma patients. Policy experts from the Alliance for Connected Care, American Cancer Society Cancer Action Network, Bristol Myers Squibb, PAN Foundation, Thomas Jefferson University and Van Scoyoc Associates provided invaluable insight into legislation and issues that helped prepare our advocates before heading to the Hill.
“On behalf of the Colorado contingent, I want to thank the MRF for an incredible few days in DC for Advocacy Days,” said advocate Stacey Sepp. “We felt very well prepared going into our meetings with our Congressional reps and were thrilled with the opportunity to advocate for ourselves as melanoma survivors and on behalf of the entire community of patients, survivors, and all affected.”
Advocacy Days is once a year, but the work continues. The MRF recently joined the Advisory Board for the Alliance for Connected Care to amplify the voice of the patient community in telehealth policy and will continue to use our position as melanoma advocates to urge lawmakers to pass legislation that makes participating in a clinical trial less costly, protect telehealth access and fund research for all forms of melanoma.
March was also Mucosal Melanoma Awareness Month, and our advocates are a powerful voice for this melanoma subtype that is both very rare and in great need of further research and improved treatments. Advocate Chris W. shared his powerful story in a recent blog post, and this month we were proud to publish video testimonials from JB W., mucosal melanoma survivor and Cristian J., a caregiver.
We encourage you to continue advocating for prevention and early detection of melanoma at the state level. As we prepare for Melanoma Awareness Month this May, we invite you to submit a state proclamation request to your governor to declare May Melanoma Awareness Month. It is imperative to raise awareness about the dangers of melanoma and whether you are a seasoned or first-time advocate, you too can impact the melanoma community by taking this easy step. Please contact advocacy@melanoma.org to get involved and learn more about your state’s specific proclamation requirements.
None of this would be possible without the dedication of melanoma advocates just like you. If you would like to become more involved with the Advocacy program and receive the quarterly advocacy newsletter, sign up here and make your voice heard!
With gratitude,
Kim Watkins
Advocacy Officer
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Advancing Melanoma Research: The Looney Family Legacy
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Since 1998, many generous supporters in our community have collectively invested more than $23 million to advance life-saving melanoma research.
This year, we proudly announce 17 new Medical Student Research Awards. These research grants support promising young researchers early in their scientific careers under the mentorship of established investigators in the melanoma field. The large number of grants awarded this year was made possible by the incredible generosity of donors like the family and friends of Peter Looney who, to honor his memory, have been strong supporters of the MRF for many years. This year, the Looney Legacy Foundation funded five Medical Student research grants, advancing the field of melanoma science and new treatment development. Visit the Funded Research page to view all of the grant recipients awarded to-date, and to learn more about how you can support the next treatment breakthrough, please email donate@melanoma.org.
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Measuring the Impact of Your Generosity: Our Stewardship Report
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As the largest independent organization devoted to melanoma, our work is made possible by the generosity of our donors. Guided by the principles of responsible stewardship and continued progress, the semi-annual Stewardship Report shares some recent highlights of what our community has accomplished together. Click here to read the Report and learn how your support continues to advance the MRF's mission to eradicate melanoma.
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Apply to Join a Research Grant Review Panel (No Science Background Necessary)
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Since 2019, the MRF has incorporated a patient-centric approach into the grant review process. Our patient review panel is made up of melanoma patients, caregivers, friends and family, with or without formal scientific training. In addition to ensuring that the melanoma patient’s point of view is critically represented during the grant proposal process, this program also increases the pool of skilled melanoma patient representatives to participate in other scientific advisory committees at cancer centers or various drug development stakeholders such as the Food and Drug Administration (FDA), National Cancer Institute (NCI), Department of Defense (DoD), Patient-Centered Outcomes Research Institute (PCORI), and partner organizations in the biotech/pharmaceutical field. Download the Patient Grant Review application for more information and how to apply by this year's deadline of April 24. Please email research@melanoma.org with questions about this program or any of our scientific initiatives.
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Attend a Patient & Caregiver Symposium
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Each year, we partner with leading healthcare centers across the country to host free patient and caregiver meetings to share the latest news in melanoma research, treatment, survivorship and support resources. Registration is now open for the first three events, and we invite you to join us for educational symposia at the University of North Carolina (May 1), Fred Hutchinson Cancer Center (May 20) and Case Comprehensive Cancer Center (June 10). Additional information including a draft agenda for each event will be available soon, as well as dates for additional meetings held later this year. We look forward to sharing the very latest news from melanoma experts and hope to see you there!
Thank you to Bristol Myers Squibb, Merck, Genentech and Regeneron for sponsoring the Patient Symposia Series.
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Miles for Melanoma is Here!
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Last year, more than 4,500 participants in 16 cities came together to celebrate melanoma patients, survivors and caregivers while raising over $967,000 for melanoma research, education and advocacy; click here to watch an exciting recap of the 2022 Miles events! The 2023 season is just over one month away, and registration for run/walks in Washington, DC (May 6), Boston, MA (May 13), Memphis, TN (June 3) and Denver, CO (June 10) is now open! Register today to get an early start on team recruitment and earning exciting fundraising incentives. Registration for additional events will open in the near future; visit the Miles for Melanoma homepage to find a run/walk near you, mark your calendars and get ready to run, walk and raise life-saving funds to cure melanoma!
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Thank You, Mark Weinzierl!
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Mark Weinzierl joined the Board of Directors in 2016, having previously served on the CURE OM Steering Committee since 2011. Since his own ocular melanoma (OM) diagnosis in 2006, Mark has been a dedicated advocate for the OM community and generous donor to our research program. His leadership greatly contributed to the expansion of education and support resources for patients facing all forms of rare melanoma and he has been a champion for the CURE OM initiative since its founding. While his term on the Board has come to an end, Mark will remain an active member of the CURE OM community and dedicated advocate for all melanoma patients, survivors and caregivers. On behalf of the MRF Board, staff and members of our community, we extend our heartfelt thanks for all that he has done and will continue to help us accomplish. Thank you, Mark!
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Upcoming Events
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- June 2: MRF Breakthrough Consortium Annual Meeting
- July 16: Miles for Melanoma Chicago
- August 6: Miles for Melanoma Cleveland
- August 19: Miles for Melanoma Twin Cities
- August 26: Miles for Melanoma Philadelphia
- September 16: Miles for Melanoma Seattle
- September 17: Miles for Melanoma New Jersey
- October 15: Miles for Melanoma San Diego
- November 12: Miles for Melanoma San Francisco
- Date TBD: Miles for Melanoma New York City
- Date TBD: Miles for Melanoma Atlanta
- Date TBD: Miles for Melanoma Los Angeles
- Date TBD: Miles for Melanoma Florida
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