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Ocular Melanoma Research Grant Awarded
 The Melanoma Research Foundation (MRF) is pleased to announce that Walter Fast, Ph.D. has been selected as the recipient of a one-year MRF CURE OM Pilot Proposal Focused on GNAQ/11 Mutant Uveal Melanoma. Dr. Fast is a Professor and the William I. Dismukes Fellow in Pharmacy, Division of Chemical Biology and Medicinal Chemistry, College of Pharmacy at the University of Texas at Austin.
The grant awards $100,000 for the novel, innovative study of the biology and therapeutic targeting of GNAQ/11 mutant uveal melanoma. This research funding was made possible through the efforts of the MRF as well as the generosity of Jack Odell, John Dagres and their supporters.
Read more about the research this will support, including a lay abstract of Dr. Fast's proposal, in the official announcement.
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CURE OM Patient Registry Update
Following thorough and engaging discussions between researchers, physicians, patients and their loved ones at the 2016 Eyes on a Cure: Patient and Caregiver Symposium, a national patient-reported ocular melanoma (OM) registry was determined to be a critical need in the research community. At this meeting, the MRF's CURE OM initiative committed to leading the development of this important new resource.
This project has since seen tremendous progress, including raising funds to initiate the program, assembling a team of registry experts and a Patient Registry Steering Committee to lead the project, forming key academic and industry partnerships and building out the registry protocol and data set. Steering Committee members Chad Kimbler and Carla Tressel gave a recent project briefing at the CURE OM Patient Symposium in April, which is also available online.
In recognition of the remarkable work our community has accomplished thus far, MRF CEO Kyleigh LiPira and CURE OM Co-founder & Director Sara Selig recently published a comprehensive update on the CURE OM Patient Registry development project.
Check out the project's most recent milestones, and the exciting steps planned for the coming months!
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7th Annual Eyes on a Cure: Patient & Caregiver Symposium
On April 20-22, 2018, patients, caregivers, medical professionals, and MRF staff joined together at the 7th Annual Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium in Denver, CO. The University of Colorado’s Rocky Mountain Lions Eye Clinic partnered with the MRF, along with speakers from MD Anderson, the University of Utah, Colorado Retina Associates and Thomas Jefferson University. More than 100 people attended the two day event where two program tracks offered content on both science and mindful emotional support. Attendees participated in discussions and activities ranging from Radiology and Liver Directed Therapies to Yoga and Grief, Mindfulness and Art Therapy. For those unable to attend, presentation slides have been uploaded to the MRF website, and video recordings of the presentations are coming soon - stay tuned!
For a first hand account, check out this recent blog post by Stormy Thornton about finding knowledge and feeling loved at the CURE OM Symposium!
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Miles for Melanoma 2018
The 2018 Miles for Melanoma season is in full swing, and the OM community has played a huge role so far! From Boston, Washington, DC, Denver and Los Angeles, CURE OM teams have come out in force and raised almost $20,000 for ocular melanoma research and education.
 At the Miles for Melanoma DC 5k, Team CURE OM was the top fundraising team with over $11,000 raised! Led by team captain Sheila Levine, Team CURE OM included Gayla Timm, who was recognized as the top individual fundraiser at the entire event!
A tremendous thank you to everyone who made such a strong start possible, and don't worry, we still have a lot of walking, running and raising left to do. Check out where we'll be next on the 2018 Miles for Melanoma Calendar!
Can't make it to a Miles for Melanoma 5k this year? Learn how you can support CURE OM at other events - or even host your own - as a CommUNITY Fundraiser!
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Advocacy and Patient Support Highlights
- CURE OM's development of a national Patient Registry was featured in the publication, A3 Advocacy Activities in Action, presented at the American Society of Clinical Oncology (ASCO) Annual Meeting during the Bristol-Myers Squibb GOAL Meeting. This issue focused on evidence-based advocacy cases and data usage, and featured interviews with MRF CEO Kyleigh LiPira, CURE OM Co-founder & Director, Dr. Sara Selig and Patient Registry Steering Committee member Dr. Marlana Orloff.
- CURE OM Co-founder & Director, Dr. Sara Selig, joined Mayo Clinic Radio to discuss ocular melanoma, the CURE OM patient registry and her personal connection to OM that led to the creation of the MRF's CURE OM initiative in 2011.
- The MRF Buddy Program is in need of OM buddies! If you are interested in
giving some time back to the OM community, please consider this opportunity.
Buddies assist new patients or caregivers as they navigate the early days of their OM
journey and offer support from their own experiences. The Buddy Program is an important resource for OM patients who need to find someone who can relate and talk with along the way. To get involved, please email education@melanoma.org.
- CURE OM Program Manager Lauren Johnston recently met with MD Anderson Cancer Center's Uveal Melanoma Task Force to learn more about their OM research programs and to share CURE OM's resources for patients and caregivers.
- At the 5th Annual Wings of Hope for Melanoma Philadelphia Gala, the MRF was honored to present Dr. Marlana Orloff with the CURE OM Vision of Hope Award, in recognition of her incredible commitment to the ocular melanoma community. Photos from the gala are available on the MRF Facebook page.
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Ocular Melanoma in the News
Below is a sample of recent ocular melanoma news.
“Aura Biosciences Announces Update of Clinical Safety and Efficacy Data on Lead Candidate AU-011 for Choroidal Melanoma,” Aura Biosciences
“Blood Test for Deadly Uveal Cancer of the Eye Gives New Hope to Patients After ECU Research,” ABC.net
“Family of Woman Who Died from Rare Eye Cancer on Quest for Answers,” WRAL
“Rare Eye Cancer Ocular Melanoma Presents Medical Mystery for Doctors,” WBUR
“After CBS News Report on Rare Eye Cancer Mystery, Hundreds Share Similar Stories,” CBS This Morning
“Rare Eye Cancer Detected in Two Separate Groups in Two States,” NBC Nightly News with Lester Holt
“"What's Going On?" Rare Form of Eye Cancer Detected in Two Groups in Two States,” CBS This Morning
“Expert Discusses Findings from Cancer Cluster Research,” WSOC
“Jody "The Light",” 7 Billion Ones
“A Rare Eye Cancer is Mysteriously Targeting Women in Alabama and North Carolina,” Newsweek
“Efforts Underway to Find Research Funding for Auburn University Ocular Melanoma Cases,” WLTZ
“Study Shows Need for Early Support Among People with Uveal Melanoma,” UCLA
“A Group of Auburn Grads Developed a Rare Eye Cancer, and Scientists Want to Know Why,” Ledger-Enquirer
“Community Searches for Answers About a Mysterious Eye Cancer Cluster,” WSOC
“CBS 42 Investigates Rare Cancer Mystery in Auburn,” CBS 42
“Scientists Repurpose HPV Vaccine Technology to Fight Eye Cancer,” National Cancer Institute
“Lady Bears Legend, Assistant Coach Jackie Stiles to Undergo Ocular Melanoma Treatment,” Springfield News Leader
“Mom with Rare Eye Cancer Gives Birth to Healthy Twins,” FOX 29
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