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Creating Awareness & Advancing Knowledge
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From the desk of MRF CEO Kyleigh LiPira:
Tomorrow (February 29) is Rare Disease Day and an opportunity for our community to recognize the patients living with the rarer forms of melanoma and create awareness aboutacral, pediatric, mucosal and ocular melanoma. While great strides have been made in cutaneous (skin) melanoma, the rarer forms of melanoma are lagging far behind in treatment options. Since 1975, there have been 19 FDA approved drugs/treatments for adult and pediatric melanoma patients of which, only two have been FDA approved to treat metastatic uveal (eye) melanoma.
Mucosal melanoma is a rare form of melanoma that develops in the mucous membranes of the body, such as those lining the mouth, nose, throat, anus or genital areas. It is estimated that there are around 1,200 new cases of mucosal melanomadiagnosed in the United States each year. In December 2022, the MRF convened its inaugural meeting to increase collaboration amongst mucosal melanoma patients/caregivers and investigators to discuss pertinent topics for the mucosal melanoma community. Recently, a summary of the meeting was published in Pigment Cell & Melanoma Research. Regarding the meeting and publication, paper co-author and meeting Co-Chair Richard D. Carvajal, MD shared, “This pioneering meeting brought together mucosal melanoma investigators with patients & caregivers to collaborate on key issues and advances facing the mucosal melanoma community.”
On Rare Disease Day, we invite you to share your unique journey with the rarer forms of melanoma and strengthen the bonds of these communities across social media by tagging the MRF (@CureMelanoma) and the CURE OM initiative (@MRFCureOM) and using the hashtag #ShareYourColors.
With gratitude,
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FDA Announces Approval of TIL Therapy or AMTAGVI™
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On February 16, the FDA announced the approval of TIL therapy or AMTAGVI™ the first cellular therapy indicated for the treatment of adult patients with cutaneous (skin) melanoma that is unable to be removed with surgery (unresectable) or has spread to other parts of the body (metastatic) that previously has been treated with other therapies.
Since 2011, 16 drugs have been FDA approved that can be used singly or in combination to treat 31 melanoma indications in adult and pediatric patients, including two drugs approved specifically for metastatic uveal (eye) melanoma. While work remains to improve long term survival rates in subpopulations of melanoma patients, these drugs have increased the survival rate for metastatic cutaneous (skin) melanoma patients by nearly 50%.
Learn more about what TIL therapy is and how it works in your body with this helpful ‘TIL Cell Therapy for Melanoma’ infographic in addition to many other helpful patient and caregiver resources in our Education Institute and stay tuned for an Ask The Expert webinar to be announced next month discussing this newly approved therapy.
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TIL photo 1.JPG
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Donor Highlight: Sally Landenberger Shares Her Journey as a Caregiver
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On February 16, we commemorated National Caregivers Day to pay tribute to the remarkable individuals who generously offer both physical and emotional assistance to our courageous melanoma community. Dive into Sally Landenberger's touching story as she recounts her experience as a caregiver to her beloved son, Aaron Landenberger, and explains why she donates to the MRF. Additionally, we invite you to explore our array of resources tailored specifically for caregivers on our Patients and Caregivers page. Their dedication and support are invaluable, and we honor them wholeheartedly.
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Patient & Caregiver Educational Webinar Offerings
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Ask the Expert Webinar Series
We hosted two exciting Ask the Expert webinars in January and February. On January 30, we had an informative discussion on oncolytic viral therapies in the treatment of melanoma and skin cancers featuring Dr. Gino Kin from USC Norris Comprehensive Cancer Center and cutaneous melanoma patient advocates Donna Soskin and Jim Day . More recently, on February 15, we held a discussion with Dr. Harriet Kluger from Yale Cancer Center and cutaneous melanoma survivor and patient advocate Jennifer Ficko on the current state and evolution of immunotherapy treatment in melanoma. If you were unable to join the live webinar, or want to revisit the presentation, the recordings are now available on the MRF YouTube channel.
Thank you to Replimune for sponsoring our January webinar and Agenus for sponsoring our February webinar.
NEW! Advocacy Webinar Series - Melanoma Matters: Our Drive for Rural Health Equity
The MRF launched its first webinar in a series dedicated to exploring the challenges unique to rural melanoma patients as they seek care and treatment. Joined by an esteemed panel featuring Director of Advocacy Kim Watkins, Dr. Robert Brodell from the University of Mississippi Medical Center, Dr. Jane Bolin, JD, BSN from the Texas A&M University School of Nursing and Justin Markowski, MA, MPH from the Yale School of Medicine, panelists discussed the difficulty rural communities face accessing dermatological skin cancer screenings, how those barriers shape patient outcomes, and policy solutions to address this pressing health equity issue. Watch the full recording now on the MRF YouTube channel.
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Together Against Melanoma: Patient and Caregiver Symposia Series
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Join us for our in-person and virtual cutaneous melanoma patient symposium in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University to learn the latest in diagnosis, treatment and supportive care surrounding cutaneous melanoma. To learn more and to register, click here. Recordings from previous patient symposia are available to view on the MRF YouTube Page.
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Register Today: Join us for the Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium
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Join the MRF's CURE OM initiative in Boston, MA for the annual Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium on May 3-5! This three-day in-person and virtual meeting will focus on the latest in ocular melanoma, treatment and research. Registration is now open and can be accessed here. There are scholarships available for this meeting, so if interested, please email education@melanoma.org for more information.
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WATCH highlights from our 2023 Miles for Melanoma Season
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Unveiling the incredible journey of our 2023 Miles for Melanoma season! From 16 cities, 6,000 passionate participants, 357 teams, to raising over $1.1 million for the melanoma community – this recap video captures the heart and soul of our collective impact. Thank you for making every step count!
Get ready because the 2024 season is approaching fast! Registration is now open for our first three events in Memphis, TN (May 4), New England, MA (May 4) and Washington, DC (May 11)! If you're part of these amazing communities, don't wait—register today to kick off your team recruitment and fundraising efforts early. Stay tuned as registration for more events will open soon. Visit our Miles for Melanoma homepage to locate a run/walk near you, save the dates and prepare to make a difference by running, walking and raising vital funds to combat melanoma.
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Save the Date for the Upcoming 2024 Galas
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Mark your calendars! Join us for the 13th Annual Denver Gala on Thursday, September 19, and the 23rd Annual New York Gala on Thursday, October 24. These galas are pivotal moments for us to come together, celebrate our mission, and raise essential funds for melanoma research. They also serve as platforms to educate patients and physicians about melanoma prevention, diagnosis and treatment while advocating for the melanoma community. The evenings will be filled with impactful experiences including a cocktail reception, live entertainment, open bar, gourmet dinner, and captivating silent and live auctions, topped off with an inspiring award show! Don't miss out on these unforgettable events!
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Collaboration with the Dermatology Community
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Three years ago, the MRF established the Dermatology Advisory Council (DAC), a dynamic group comprised of leading dermatologists from different geographies and sub-specialties to support and inform our efforts in prevention and early detection of melanoma. The DAC will convene in person at the American Academy of Dermatology (AAD) Annual Meeting next month to specifically discuss strategies to increase our education efforts for patients living in rural communities and advocacy issues related to the current FDA’s work in reviewing sunscreen ingredients and the public health implications that could be a result of their future ruling.
In addition, the MRF will also host its annual #GetNaked reception for all of its partners and provide free educational resources to the communities they serve. These meetings are made possible by the generosity of our industry partners Bristol-Myers Squibb, Neutrogena, EltaMD and TiZo.
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Upcoming Events
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March 3 - 5: Advocacy Days
March 8 - 12: American Academy of Dermatology (AAD)
April 5-10: American Association for Cancer Research (AACR)
April 27: Robert H. Lurie Comprehensive Cancer Center of Northerwestern University Patient and Caregiver Symposium
May 3 - 5: Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium
May 4: Memphis Miles for Melanoma
May 4: New England Miles for Melanoma
May 11: DC Miles for Melanoma
May 18: Fred Hutchinson Cancer Center Patient and Caregiver Symposium
May 31: MRF Breakthrough Consortium (MRFBC) Meeting
May 31 - June 4: American Association of Clinical Oncology (ASCO)
June 8: Lombardi Comprehensive Cancer Center of Georgetown University Patient and Caregiver Symposium
June 8: Denver Miles for Melanoma
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In the News
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Why Skin Cancer Remains Under-Diagnosed in People of Colour - Re:Solve Global Health
FDA Approves First Cellular Therapy to Treat Patients with Unresectable or Metastatic Melanoma - U.S. Food & Drug Administration
Clinical Data Lacking on Black Patients with Melanoma - AJMC
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