Melanoma Research Foundation
 
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A Year of Progress and Hope Because of You

From the desk of MRF CEO Kyleigh LiPira:


The Melanoma Research Foundation (MRF) wishes all a very happy New Year! As we officially enter 2023, we celebrate the tremendous research breakthroughs, new educational resources and patient advocacy initiatives that occurred in 2022 to benefit the melanoma community. Today, I continue to be inspired by these efforts and look forward to a year of continued progress fueled by dedicated patients, caregivers, clinicians, researchers, donors and volunteers. This month’s issue highlights some of the ways you can contribute to sustain progress for our community.

The MRF’s Education Institute provides a free platform for patients, caregivers and the public to learn more about melanoma through a variety of topics. We offer educational webinars with experts on topics such as melanoma FDA treatment approvals and clinical trials linked later in this issue and educational materials on prevention and early detection, treatment and awareness.

We encourage patients and caregivers to attend one of our upcoming symposia events like the March 31 – April 2 Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium at the Moffitt Cancer Center in Tampa, FL to learn more about uveal melanoma. Or join us for one of our cutaneous patient symposia kicking off on May 1st at UNC. This one-day event will be hybrid and open to melanoma patients and their loved ones seeking more information about treatment options as well as exciting topics like nutrition and managing stress. Registration will be open soon, but you can email education@melanoma.org now with any questions.

Once again, our Miles for Melanoma 5k walk/run series will be held nationwide in a city near you! We will kick off this year’s series in Washington, DC on May 6th. Stay tuned for more event locations and registration details which will be announced soon.

Submitting your patient or caregiver testimonial is another great way to fuel progress. We encourage you to share your personal melanoma journey to help inspire others by reaching out to marketing@melanoma.org.

We hope you join us in fostering more progress for the melanoma community by contributing a tax-deductible year-end gift. Donations to our year-end campaign will end today at 11:59pm PT, but you can pledge your support for the melanoma community all year! Thank you for your support last year and we look forward to continuing our great work together to help melanoma patients and their loved ones.





With gratitude,


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Progress is Power: Donate by January 31

Last month, we celebrated the stories of three courageous melanoma survivors who truly embody our belief that Progress is Power. On behalf of Shannon, Nicolette, Summer and the more than 1.3 million people living with melanoma in the United States, we are committed to this progress. Advances in research, greater understanding of rare melanoma subtypes and the life-saving awareness about melanoma prevention continue to benefit our community, and this is only possible because of the incredible generosity of supporters like YOU. Our 2022 end of year fundraising campaign will be open until tonight at 11:59pm PT; please take a moment to read these inspiring stories of survivorship and consider a tax-deductible donation to show your commitment that Progress is Power.

Be the Voice of the Melanoma Community on Capitol Hill


For the first time since 2020, the MRF is hosting our annual Advocacy Days in person! Join melanoma patients, caregivers, supporters and advocates from across the country on March 5-7 in Washington, DC to learn about issues facing the melanoma community, our community's key legislative priorities and then share your story with lawmakers on Capitol Hill to urge their support. Register today to be a part of the largest melanoma advocacy event of the year, and then join us in our nation's capital to be the voice of the melanoma community!




Eyes on a Cure: Ocular Melanoma Patient Symposium - Register Now!

In August, we hosted our first in-person ocular melanoma (OM) patient and caregiver symposium since 2019 (click here to watch session recordings and participant testimonials), and the next meeting is now just two months away! The next Eyes on a Cure: Patient and Caregiver Symposium will be held March 31 - April 2, 2023 at Moffitt Cancer Center in Tampa, Florida. During the symposium, participants will have the chance to network with other members of the OM community all while learning the latest in OM research and treatment development, current and upcoming clinical trials, education and awareness resources and participating in psychosocial support activities. Click here to view a draft agenda and register today, and we look forward to seeing our friends in the OM community this spring in Florida!

Thank you to Aura Biosciences and Immunocore for their support of this patient education event.




Watch Now: New Education Institute Webinars Available

Melanoma education in the new year is off to a fast start with two new webinars hosted in January and now available to watch on demand. On January 20, our first Ask the Expert webinar discussed the research advances of the previous year, what they mean for our community and what still lies ahead. Adil Daud, MD (UCSF Helen Diller Family Comprehensive Cancer Center) and Kim Margolin, MD, FACP, FASCO (St. John's Cancer Institute) led the engaging live discussion, which you can now view here. Thank you to Iovance Biotherapeutics for sponsoring this important educational opportunity.

On January 25, an expert panel of dermatology and oncology specialists hosted “Partnering with Your Team to Select Treatment for Newly Diagnosed Melanoma,” a live presentation in partnership with PlatformQ Health to discuss how new immunotherapy combinations work, side effects associated with treatment, helpful strategies to maintain quality of life and how to communicate effectively with your health care team. The presentation is available to watch here.

Additional educational resources including webinars, animated videos, patient guides, awareness materials and more are available in our Education Institute.




Have Questions About Melanoma? Ask a Nurse!

If you have a question about your melanoma diagnosis or treatment like understanding your pathology report, how to better manage side effects or make informed treatment decisions, ask a nurse!

Whitney Baylor, MSN, RN, AONN-CG, joined the MRF team in December 2022. She graduated from The University of Colorado with a Master’s in Science of Nursing and has worked directly with melanoma patients for essentially her entire nursing career. Prior to joining the MRF, Whitney was the Nurse Navigator in the Melanoma Department at UC Health at Anschutz. She recently switched gears and went to work as a school RN in order to be able to spend more time with her family. Whitney’s passion for educating newly diagnosed melanoma patients along with being a point person for the additional support often needed during melanoma treatment has allowed her to provide a positive experience for hundreds of melanoma patients in Colorado and the surrounding states for over ten years. For questions about melanoma diagnosis or treatment, email askanurse@melanoma.org, and for additional support resources, visit our website here.




Research Grants: Applications Now Available

Since 1998, the MRF has funded 271 innovative, high impact, basic, translational and clinical research projects, totaling more than $23 million in grant support. Last year, the MRF awarded over $1.9 million in new melanoma research funding. This year, we will offer Established Investigator Awards, Career Development Awards, a CURE OM Award, as well as Medical Student Awards, Resident-Fellow Awards, Mid-Career Bridge Grants and a MRF Breakthrough Consortium (MRFBC) Pilot Translational Award. For more information about each award, eligibility requirements and application instructions, visit the Resarch Grant RFP page and download the Request for Proposals.




Options Bring Hope: In Honor of Lindsay Zubeck

Last year, the U.S. Food and Drug Administration approved KIMMTRAK, the first and only FDA-approved treatment for metastatic uveal melanoma. This was a historic advance that brought immense hope for the uveal melanoma community, but with one caveat: patients must have a specific genetic marker to qualify for the treatment. That means that half of all patients, including CURE OM community member Lindsay Zubeck, are still without an approved treatment option. However, as Lindsay would say, “with options comes hope.” To accelerate progress towards new and more widely effective treatment options, Lindsay’s family created the CURE OM Options Bring Hope Award in Honor of Lindsay Zubeck, which will be awarded for the first time later this year. This two-year, $250,000 award will support research towards a treatment for HLA-A*02:01-negative patients with unresectable or metastatic uveal melanoma, and represents an exciting step forward in uveal melanoma research. Thank you to the Zubeck family and their supporters for this act of initiative and generosity! If you are interested in supporting a research grant, please email donate@melanoma.org.




 

Upcoming Events





 








  • May 6: Miles for Melanoma DC
  • May 13: Miles for Melanoma Boston
  • June 2: MRF Breakthrough Consortium Annual Meeting
  • June 3: Miles for Melanoma Memphis
  • June 10: Miles for Melanoma Denver
  • August 6: Miles for Melanoma Cleveland
  • August 26: Miles for Melanoma Philadelphia
  • September 17: Miles for Melanoma New Jersey
  • September 21: Denver Gala
  • October 15: Miles for Melanoma San Diego
  • October 26: New York Gala
  • October 29: Miles for Melanoma Chicago
  • November 12: Miles for Melanoma San Francisco
  • Date TBD: Miles for Melanoma Twin Cities
  • 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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