Being an Advocate for Change

From the desk of MRF CEO Kyleigh LiPira:

This month the Melanoma Research Foundation hosted its first ever virtual Advocacy Days. This yearly event is typically held in person and advocates come from all over the country to meet with their representatives on Capitol Hill. This year, over 128 advocates met with their lawmakers virtually and although they were not able to shake hands, they were still able to inspire change.

One of the most important things our advocates can do to benefit the entire melanoma community is to use their voice, tell their story, and urge their representatives to sign on to key legislation that will make a difference for the 1.3 million Americans battling melanoma. Since 2018, MRF advocates have been instrumental in increasing funding for melanoma research through the Department of Defense, growing the budget from $10 million to $30 million in 2020. This year, our advocates asked their representatives to sign on for an increase in funding to $40 million. In addition, our advocates urged their lawmakers to contact the FDA and encourage them to finalize a proposed 2016 rule banning minors from using tanning beds. Use of tanning beds increases an individual's risk of melanoma by 76%. For a full recap of what our advocates accomplished this year, read the 2021 Advocacy Brief.

Since the program began in 2009, the MRF has secured over $112 million in Defense-funded melanoma research, hosted more than 900 advocates at our annual Advocacy Days (formerly known as the Advocacy Summit and Hill Day) and have scheduled nearly 600 meetings with lawmakers to ensure that melanoma research remains a national priority.

If you missed this year’s event, you can still join the MRF’s advocacy efforts. Sign on to receive key updates on calls to action and other important advocacy news.

Welcome MRF Board Chair Doug Brodman

The MRF is excited to announce the appointment of Douglas (Doug) Brodman as Chairman of the Board of Directors, effective April 1, 2021. Brodman, an accomplished senior executive and stage 4 melanoma survivor, succeeds Steven Silverstein, who served as Board Chair since 2013 and will now become Vice Chair during a hybrid term to offer guidance in the transition.

“It has been an incredible honor to have served as Board Chair during such a transformational era for the melanoma community,” said Silverstein. “When I was diagnosed with stage 4 melanoma seventeen years ago, there was only one FDA-approved treatment. Today, thanks to innovative research advances like those made possible by the MRF, more than a dozen approved therapies are available to patients. Through Doug’s leadership, I am confident that we will continue to support the development of new, more effective treatments and, one day, a cure for melanoma.”

Additional information about the announcement, including comments from Doug Brodman and MRF CEO Kyleigh LiPira, can be found in the official press release.

CURE OM Mini Summit

The MRF’s CURE OM initiative will be hosting the Eyes on a Cure: Ocular Melanoma Mini Summit on April 29th, 2021. This two-hour, two-panel discussion will include speakers from leading institutions including the University of Pittsburgh, MD Anderson Cancer Center, Thomas Jefferson University and more. This virtual event will consist of two sessions featuring the following panel discussions:

• The Current State of Clinical Trials
• Surveillance, Support and the Patient Perspective

For more information and to register for this FREE event, visit the page below:

Miles for Melanoma: Register Today!

And they're off! Registration is now open for the first Miles for Melanoma events of the season, including the month-long Melanoma Awareness Month coast-to-coast event. In accordance with ongoing public health guidelines, these events will be virtual, week-long celebrations of each community with exciting fundraising and fitness challenges each day, leading up to an online Celebration Ceremony to kick off race day on Saturday. Registration is currently open - and the fundraising competition is underway - for our Melanoma Awareness Month month-long run/walk (May 2021) and virtual races in Memphis (May 22), Denver (June 12), Florida (June 19) and Atlanta (June 26). Registration for each event is only $10, and participants who raise $100 or more will receive a UPF 50+ race shirt from Coolibar.

Visit the Miles for Melanoma page to see the entire 2021 event series and mark your calendar for a race near you!

The MRF thanks Miles for Melanoma National Sponsors Neutrogena, Coolibar, Novartis and Bristol-Myers Squibb.

Have Questions? Ask the Expert!

In April, the MRF will partner with Castle Biosciences to host a weekly series of interactive presentations on Facebook Live, covering a variety of topics related to melanoma. Beginning on April 6, tune in to the MRF Facebook page every Tuesday afternoon to learn more about subjects including the melanoma patient's journey, familial vs. tumor genetics, factors that may influence melanoma prognosis and survivorship as it relates to high-risk melanoma patients.

The MRF is grateful to our partners at Castle Biosciences for their ongoing support of the Ask the Expert virtual presentation series and their strong commitment to melanoma patient education. Visit the MRF Facebook page to watch previous Ask the Expert presentations and then join us this month to learn the very latest news in melanoma diagnosis and treatment. Be sure to follow the MRF Facebook page for reminders about upcoming presentations and ways to get involved.

Meet Education Officer Amy Marbaugh, RN, BSN, MS

The MRF is pleased to welcome Amy Marbaugh, RN, BSN, MS as the newest member of our dedicated staff team. Amy took on the role of Education Officer in January 2021 and has been hard at work to enhance the MRF’s Education Institute to provide ongoing melanoma education training, resources, programming, and furthering the MRF’s educational goals of prevention and awareness.

Amy brings unique experience to the MRF team. A nurse by training, she began her nursing career as an inpatient cardiac nurse before transitioning to oncology. She started as an outpatient oncology infusion nurse, and later became a nurse navigator and nursing supervisor, gaining oncology knowledge while working at academic and community cancer centers. Wanting to move into the cancer non-profit space, Amy joined the Association of Community Cancer Centers, providing clinical expertise while leading multiple education projects for oncology professionals. Most recently, Amy worked at the American Cancer Society on global oncology issues, primarily working with oncologists across Sub-Saharan Africa to develop coordinated cancer treatment guidelines for the region.

Amy received her Master’s degree in Global Health from George Mason University, and her Bachelor’s degree in Nursing from the University of Toledo. A native Ohioan, she cheers on Cleveland baseball; she also enjoys quoting fan-favorite TV shows, learning yoga and meditation, and being an unwilling squirrel-chaser with her miniature schnauzer, Lucy.

Celebrating 25 Years!

As the MRF celebrates its 25th Anniversary in 2021, we have so many people to thank and honor for their continuous dedication and support. Throughout this year, follow along with the MRF as we highlight some of the many incredible advocates, community members, patients, partners, researchers, board members and honorees that have made our work possible. Visit our 25th Anniversary page below to find a special guest series highlighting those who have impacted our first quarter century, learn about new ways to get involved and help us celebrate 25 years of HOPE!

Unlock the Cure!

The MRF’s 25th Anniversary Unlock the Cure Community Fundraiser ticket sale is still live and the first drawing is just over one month away! You have a chance to win some incredible items donated by advocates, cause marketing and corporate partners. Tickets are only $25 and you can purchase as many as you want. Help us reach our goal this year of raising $25,000 and continue to support melanoma patients and their families. Remember that hope changes everything! Click below to get your tickets today:

Managing Immunotherapy-Related Treatment Side Effects

In the past decade there has been remarkable progress in melanoma research and treatment development, particularly in the field of immunotherapy, which triggers the immune system to seek out and fight melanoma anywhere in the body. However, this powerful form of treatment can also trigger significant side effects that may make it necessary to pause or cancel treatment.

In 2017, with the generous support of Bristol Myers Squibb, the MRF and its Breakthrough Consortium (MRFBC) granted a Team Award to Douglas B. Johnson, MD, MSCI of Vanderbilt University (Co-PIs: Sunandana Chandra, MD, MS, Northwestern Medicine and Meghan Mooradian, MD, Massachusetts General Hospital) for a study titled Comprehensive profiling of immune checkpoint inhibitor colitis. By gaining a better understanding on how to identify and treat side effects related to checkpoint inhibitor therapy, more patients may be eligible and able to complete this powerful treatment regimen.

In commemoration of the MRF's 25th Anniversary and longstanding commitment to supporting life-saving melanoma research, Dr. Johnson shared a guest blog post explaining how this grant helped to advance the scientific field further, and even led to several additional grants from the National Institutes of Health to perform larger, more detailed studies.