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Dear CURE OM Community,

Welcome to the fall edition of the Eye on OM Quarterly Newsletter! This season brings new opportunities to share, learn and grow together as an ocular melanoma (OM) community. My background is in oncology, social work and patient education and stepping into this role managing educational programs for the rare melanoma subtypes, including OM, has already shown me just how remarkable and engaged this community is. 

This fall also marks a very special milestone; the 14th Anniversary of the MRF’s CURE Ocular Melanoma (CURE OM) initiative celebrated on October 31. Founded in 2011, CURE OM (Community United for Research and Education of Ocular Melanoma) was created to advance awareness, research, advocacy and support for those impacted by this rare disease. OM affects nearly 2,000 Americans each year and CURE OM has helped unite a community that once faced isolation, driving innovation and connection through science and shared experience. 

Over the past 14 years, together we have: 

  • Funded 28 OM research grants, totaling nearly $2.6 million, paving the way for innovative therapies 

  • Hosted 14 Global CURE OM Science Meetings, uniting leading experts worldwide to accelerate treatment discoveries 

  • Connected hundreds of patients and caregivers through 14 Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposiums across the US 

Because of the dedication of the CURE OM initiative and the broader ocular melanoma research community, these efforts have helped advance the field and contributed to the development of the two FDA-approved treatments for metastatic ocular melanoma: 

  • Tebentafusp-tebn (Kimmtrak) – the first FDA-approved systemic therapy for metastatic ocular melanoma. Learn more. 

  • Melphalan Delivered Directly to the Liver (Hepzato Kit) – the first FDA-approved liver-directed therapy for metastatic ocular melanoma. Learn more. 

These milestones reflect the power of collaboration, research and community in driving progress for patients and families affected by OM. As we celebrate this anniversary, we also recognize the work still ahead to ensure every patient has access to effective treatments and the support they deserve. We hope you will join us in this mission.  

Each November, the CURE OM initiative creates awareness about eye health through the #EyeGetDilated campaign to lift up powerful patient and survivor stories while educating the wider public about the importance of routine eye exams for early detection of OM and other eye diseases. Did you know that a simple dilated eye exam can help detect signs of OM early? All month, connect with us via social media to gain expert tips, access helpful educational resources and read community stories with the unilateral goal of elevating the importance of eye health in early cancer detection and overall wellness. We hope you’ll join in by sharing your own story of why you get dilated with #EyeGetDilated and inspiring others to do the same. 

In this issue, you’ll find a wide range of updates from across the OM space: recordings of recent Ask the Expert webinars, registration for our 15th Annual Eyes on a Cure Patient and Caregiver Symposium, registration for our next Advocacy Days in Washington, DC, helpful MRF resources and opportunities to participate in OM community events happening across the United States. You’ll also find ways to get involved in research and fundraising events like Miles for Melanoma in your city. 

Learn more about the CURE OM initiative here 

Thank you for being such an essential part of this community; we couldn’t do this work without you. 

 

With gratitude, 
Caroline Glavin 
Education Program Manager – Rare Melanoma Subtypes 

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Join our#EyeGetDilated campaign all month long by following our CUREOM social media pages below:

CURE OM Facebook

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Register Now: 2026 Advocacy Days

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Registration is now open for Advocacy Days, happening March 1–3, 2026, in Washington, DC!

Join OM patients, caregivers, advocates and supporters from across the country as we come together to share stories, connect with lawmakers and champion policies that improve outcomes for everyone affected by melanoma—including those living with rare subtypes like OM.

This is your opportunity to help shape a brighter future for the OM community by raising awareness on Capitol Hill and highlighting the crucial importance of advocacy for rare cancers like OM.

Travel scholarships are available but please note availability is limited and will be considered by a lottery based system. 

Register today and make your voice heard!

Register Now: 15th Annual Eyes on a Cure: Ocular Melanoma Patient & Caregiver Symposium 

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We’re thrilled to announce that registration is now open for the 15th Annual Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium, taking place April 17–19, 2026, in Miami, Florida. 

Held in partnership with the Bascom Palmer Eye Institute and the Sylvester Comprehensive Cancer, this three-day event brings together patients, caregivers and leading experts for sessions focused on primary and metastatic ocular melanoma, supportive care and psychosocial wellbeing, along with plenty of opportunities for community connection and fun. 

We hope to see you in Miami for this inspiring weekend dedicated to education, support and community! 

In the News

Breakthrough Cell Therapy Shows Promise for Uveal Melanoma 

Please note: Throughout this section, “ocular melanoma (OM)” and “uveal melanoma” are used interchangeably to describe the same disease. 

Eyes Widen for Uveal Melanoma Treatment: Dr. Sapna Patel’s Groundbreaking Findings at ESMO 2025 

We’re excited to highlight the remarkable work of Dr. Sapna Patel, a leading oncologist and researcher at the University of Colorado Cancer Center, a longtime CURE OM expert speaker and valued member of the CURE OM Scientific Steering Committee. At the European Society for Medical Oncology (ESMO) 2025 Congress, Dr. Patel presented groundbreaking findings that may help transform the treatment landscape for patients with uveal melanoma. 

Dr. Patel unveiled results from a phase I trial evaluating a novel cell therapy approach (anzutresgene autoleucel, or “anzu-cel”) targeting the antigen PRAME in patients with metastatic uveal melanoma. (Read the full article) 

Key takeaways: 
• Among 16 treated patients, 100% showed some tumor shrinkage, with a confirmed objective response rate (cORR) of about 67%. 
• Responses were seen in both liver and extra-hepatic metastases, even among patients who had received prior T-cell receptor therapies. 
• The safety profile was manageable, with most side effects being low-grade. 

Why it matters: 
Uveal melanoma has historically lacked effective systemic treatment options. PRAME, expressed in up to 90% of cases, represents a promising new target. As Dr. Patel noted, these results “signal a much-needed breakthrough for patients with metastatic uveal melanoma” and could “redefine the treatment paradigm.” 

For our community: 
We’re proud that Dr. Patel, a frequent collaborator and dedicated member of the CURE OM Scientific Steering Committee, is helping to lead this charge toward new hope for patients and families affected by uveal melanoma. We’ll continue to share updates as this research progresses and moves closer to clinical application. 

FDA Grants Fast Track Status to NBM-BMX for Metastatic Uveal Melanoma 

The FDA has granted Fast Track designation to NBM-BMX, a new bispecific molecule being developed for patients with metastatic uveal melanoma. The therapy is designed to trigger a targeted immune response against melanoma cells while limiting toxicity. 

This designation highlights the urgent need for more effective treatment options for this rare and aggressive cancer and will help speed the therapy’s clinical development and review. 

CURE OM on the Road

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Fred Hutch Ocular Melanoma (OM) Patient and Caregiver Education Symposium  

The MRF participated in the OM Patient and Caregiver Education Symposium at Fred Hutchinson Cancer Center. Dr. Shailender Bhatia opened the event by highlighting Fred Hutch’s growing focus on ocular melanoma and the importance of patient-centered education. 

Dr. Andrew Stacey shared an overview of uveal melanoma biology, diagnosis and treatment options, including laser and radiation therapies, active clinical trials and recent FDA-approved advances. Attendees also heard from two featured patients who spoke about resilience, complementary approaches and coping throughout their cancer journey. 

The event showcased both scientific progress and the lived experiences of the OM community. Through CURE OM, the MRF continues to advance education, advocacy and research for those affected by ocular melanoma. 

For more from the symposium, view the full recording here.  

Thomas Jefferson University Hospital Ocular Melanoma Patient & Caregiver Symposium  

The MRF participated in the 2025 Ocular Melanoma Patient & Caregiver Symposium hosted by Thomas Jefferson University Hospital. The event brought together patients, caregivers and experts to share the latest updates in treatment, research and survivorship. 

Jefferson’s interventional radiology team presented on their work through the Metastatic Uveal Melanoma Center, showcasing how advanced imaging enables minimally invasive targeted procedures. For more than 20 years this multidisciplinary team has collaborated across specialties to personalize care, improve quality of life and extend outcomes for OM patients. 

The MRF also tabled at the event and shared educational, support and advocacy resources alongside other leading organizations. It was an inspiring day of learning, connection and hope. Videos from the symposium are available here.  

If you missed any of our recent “Ask the Expert” or the Ocular Melanoma Patient & Caregiver Symposium, we’ve got you covered below!

Stay informed on the latest updates in OM care with our latest webinars. Each session features expert insights and practical takeaways to help patients, caregivers and advocates better understand the evolving treatment landscape of ocular melanoma. 

March – Ask the Expert: What’s New in Primary Ocular Melanoma Treatment and Clinical Trials with Dr. Arun Singh 
Focused on the latest advancements in primary OM treatment and clinical trials. Dr. Arun Singh, Director of the Department of Ophthalmic Oncology at the Cole Eye Institute, Cleveland Clinic, discussed several promising treatments currently under investigation. 

Watch the full webinar here. 

July – Ask the Experts: Focusing on the Liver: Treatment Approaches in Metastatic Ocular Melanoma 
When uveal melanoma spreads, it most often affects the liver. This session explored how doctors are targeting the liver with specialized treatments and what new options are being developed to treat the whole body. The discussion also covered the first FDA-approved therapy for this rare cancer and what’s on the horizon in clinical trials. 
Presented by Vincent T. Ma, MD (University of Wisconsin, Madison) and Patient Advocate Paul Lynch. 

Watch the full webinar here.

July – Ask the Expert: 2025 ASCO Highlights for the Uveal Melanoma Community 
Dr. Inderjit Mehmi, a leading medical oncologist specializing in melanoma, broke down key takeaways from the 2025 ASCO Annual Meeting- an international oncology meeting held each year in Chicago. The session highlighted the latest research, treatment advances and clinical trial updates relevant to the uveal melanoma community. 

Watch the full webinar here.

Support Groups: Space for Connection

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We invite you to participate in our upcoming CURE OM online support groups, which take place monthly: 

  • First Wednesday of each month from 1:00–2:00 PM EST / 10:00–11:00 AM PST 

This group is offered in partnership with the Sidney Kimmel Comprehensive Cancer Center at Jefferson and is facilitated by Molly Vocino, MSW, LCSW, a licensed clinical oncology social worker. The group’s discussion centers on the metastatic ocular melanoma experience. If you’ve attended previously, we warmly encourage you to continue joining. Register here 

  • Fourth Thursday of each month from 7:00 – 8:00 PM EST / 4:00 – 5:00 PM PST 
    This evening group is facilitated by the MRF’s Education Program Manager, Caroline Glavin, MSW. Register here. The group is open to all ocular melanoma patients and caregivers.  

These groups are designed to foster emotional support, shared understanding and connection. Whether you're newly navigating an ocular melanoma diagnosis or have been living with it for years, this is a space to reflect, express feelings, explore coping strategies and find comfort in community. 

For more information, please reach out to cureom@melanoma.org.

Miles for Melanoma

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Members of Team Kimmie’s Crew at the San Diego Miles for Melanoma

Our 2025 Miles for Melanoma 5K season is entering its final stretch, but there’s still time to be part of something powerful. Join the movement by forming an ocular melanoma (OM) team and standing alongside others in the OM community who are walking, running and fundraising toward one shared goal: a future without melanoma. These teams not only raise essential dollars for research and patient support but also honor the loved ones, survivors and fighters who inspire us every day.  

Already this year, OM teams have shown the incredible power of community and determination. In August, Team Jefferson raised over $1,100 at the Philadelphia Miles for Melanoma 5K. Just one month later, Team All for Dave inspired extraordinary generosity at the New York event, raising more than $8,700. And in October, at our San Diego 5K, Team Mel-uh-no More and Team Kimmie’s Crew joined forces to raise over $8,525 for the OM community. Together, these teams prove that when passionate individuals and families unite for a common purpose, the impact is truly life-changing. 

As our season winds down, the journey continues with a few more incredible events still ahead across the country: San Francisco (Nov 16)Tampa Bay (Dec 6) and Fort Myers (Dec 13). Stay tuned, registration for our February events in Miami, FL (Feb 8) and Orange County, CA (Feb 22) opens this month!  

Each event is a chance to unite, raise awareness and move closer to a future without melanoma. By forming an OM-specific team, you can unlock fundraising incentives, create lasting connections and honor someone you love or give back as a survivor. Every step, mile and dollar fuels the research, education and advocacy needed to fight ocular melanoma. 

Join the OM community this season — start your team and help make every race count toward a cure. 

CommUNITY/Fundraising  

Join the OM community this season — start your team and help make every race count toward a cure. Put the “fun” in fundraising with our CommUNITY Fundraising program! By raising life-saving funds, you, too, can help make a difference in melanoma research. Ready to make a difference? Host your own CommUNITY Fundraiser and help support the fight against melanoma.

Contact us at volunteer@melanoma.org to learn more and get started! 

Research & Science Updates

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The CURE OM initiative hosted its 14th Annual CURE OM Global Science Meeting on October 25 in Amsterdam, held in conjunction with the Society for Melanoma Research Annual Meeting. The event brought together leading ocular melanoma (OM) experts to share cutting-edge research and explore new advancements in immunotherapy, cellular approaches and translational science.

Stay tuned for a full meeting recap blog highlighting key takeaways and how these advancements will shape the future of care for the OM community.

MRF Resources for the OM Community 

  • Patient ForumConnect with other patients and caregivers.  

  • Ask a Nurse: Connect with an oncology nurse for guidance and support. To get started, simply email askanurse@melanoma.org or call 202-742-5898 and our nurse will follow up with you directly. 

Join Us for Our Upcoming Events

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