Eyes on a Cure: Patient & Caregiver Symposium

In response to national health guidance and travel restrictions, earlier this year the MRF made the difficult but necessary decision to postpone all of our spring events, including the highly anticipated Eyes on a Cure: OM Patient & Caregiver Symposium. While we had hoped to see all of our friends in Houston this April, the time apart has left us only more excited to come together at the rescheduled summit on November 20-22, 2020! The venue and lodging will remain the same, with information about the discounted CURE OM room block available in the coming weeks - stay tuned! This year, CURE OM will join forces with our partners and friends at Ocumel Canada and welcome international speakers and guests from that organization. While the agenda is subject to change in accordance with travel restrictions and health care policies, additional speakers currently include Marcus Butler, MD (Princess Margaret Cancer Centre), Dan S. Gombos, MD, FACS (MD Anderson Cancer Center) Marlana Orloff, MD (Thomas Jefferson University) and Sapna Patel, MD (MD Anderson Cancer Center). 

Note: If you had previously registered for the symposium when it was scheduled for April, we do ask that you complete a new registration for the November event. We appreciate your flexibility as we adapt to and work through changes on the national health landscape, and look forward to seeing everyone this fall!

Register today for the 9th Annual Eyes on a Cure: Patient & Caregiver Symposium!

Attend a Virtual Gala!

During these unprecedented times with COVID-19, many of the larger academic labs have been shut down and melanoma research has come to a halt. As institutions slowly begin to reopen, it is critical that no more time is lost. With the MRF Virtual Gala events, the MRF will fund a grant to a local institution in support of their melanoma research team.

To support those on the front lines in the fight against melanoma, the MRF is hosting two VIRTUAL Galas in the month of June: Philadelphia on June 4 and San Francisco on June 18. You are invited to join both from the comfort of home!

TONIGHT: The Inaugural Virtual Philadelphia Gala presented by Castle Biosciences will be on June 4 (today!) at 7pm ET. YOU can be a part of giving back to the Philadelphia melanoma community by joining us for a virtual night of fun and celebration. Be a part of funding a grant to the Thomas Jefferson University Melanoma Program by donating to the Fund-A-Grant portion of the event, bid on amazing auction items or purchase a chance to win a once in a lifetime vacation. Join us from the comfort of home as we honor Andrew Aplin, PhD, Associate Director for Basic Research at the Sidney Kimmel Cancer Center, with a Humanitarian Award. Dr. Aplin is a member of the MRF Scientific Advisory Committee and an innovative leader in the melanoma research field. Dr. Aplin was the recipient of the CURE OM Unite! research award in 2016 and his lab now coordinates a leading collaboration of OM researchers. The MRF will present a Courage Award to Robert Kane in recognition of the inspiring bravery he showed in facing melanoma. Gala attendees will have the opportunity to bid on exciting items in an online silent auction and the chance to win a once-in-a-lifetime vacation package. We do hope you will join in the celebration by joining us online to help us get research back up as soon as possible. 

RSVP today for the Virtual Philadelphia Gala presented by Castle Biosciences!

Following an exciting event in Philadelphia (or wherever you may be!), we're going to the west coast for the Virtual San Francisco Gala on Thursday, June 18! The MRF will recognize the University of California, San Francisco (UCSF) Helen Diller Family Comprehensive Cancer Center Melanoma Program with a Humanitarian Award. In recognition of the strength she exemplified in facing melanoma, Paige Crist will be honored with a Courage Award. An exciting silent auction will feature one-of-a-kind items and attendees will have a chance to win their choice of two unforgettable vacation experiences. The Fund-a-Grant will support the UCSF Melanoma Program allowing it to restart the cutting edge melanoma research that has benefited patients across the country. 

RSVP today for the Virtual San Francisco Gala!

Don't forget: we're still planning to celebrate in person at our annual galas in Denver (August 6 - tickets now available), Chicago (November 5 - tickets now available) and New York (January 14, 2021 - tickets available soon)! To learn more about all five galas, including sponsorship opportunities and custom packages, visit the MRF Galas page.

Miles for Melanoma - Join Team CURE OM!

The 2020 Miles for Melanoma season was originally scheduled to begin in May but due to social distancing requirements, all of our in-person spring events had to be rescheduled. But just because we can't currently gather together doesn't mean we can't take great strides towards a cure for melanoma. Last month the MRF launched the first ever VIRTUAL Miles for Melanoma run/walk with the ambitious goal of logging 3,000 miles - roughly the distance from coast to coast across the US. Following online opening ceremonies on May 2, our community began adding up the miles as they walked, ran and biked through their communities. Not only did we meet our goal weeks ahead of schedule - our dedicated supporters DOUBLED it before the month was over! Logging over 7,000 miles, the Virtual Miles for Melanoma event covered the distance from the Atlantic to the Pacific Ocean, and then back again! Most importantly, participants raised over $39,000 for life-saving melanoma research!

Thank you to everyone who stepped up to make this event such a success and shared your progress throughout the month! For everyone who raised $100 or more, be on the lookout for your official UPF 50+ Miles for Melanoma race shirt from our friends and National Apparel Partner, Coolibar. If you raised $250 or more, a gift bag filled with skin care products and other treats will arrive in the near future courtesy of the MRF's National Prevention Sponsor, Neutrogena. The MRF is grateful to our partners for their generous support of our community and our shared mission to cure melanoma!

Don't forget that we still have a full calendar of events ahead of us, and we look forward to seeing you all in person soon. Visit the Miles for Melanoma page to view the updated schedule of 2020 events.

Cancer Has No Curve

The MRF’s #CancerHasNoCurve campaign launched on April 1, 2020 in response to a near-global shutdown related to the COVID-19 pandemic. The campaign highlights the need for continued funding for treatments, research and clinical trials for those battling cancers like melanoma, and especially those patients facing rare subtypes like ocular melanoma. Using imagery and stories of patients and caregivers in the midst of treatment we hope the broader community will understand the importance of standing with organizations like the MRF that are supporting these courageous individuals through extremely challenging times.

The MRF team has pulled together the #CancerHasNoCurve Resource Center which includes webinars on topics including “Patient Oriented Research Discoveries in Uveal Melanoma,” “Treating Uveal Melanoma During COVID-19," “Advance Care Planning” and more. Speakers including J. William Harbour, MD (Sylvester Comprehensive Cancer Center of the University of Miami Miller School of Medicine), Marlana Orloff, MD (Thomas Jefferson University) and Alan Nguyen, LCSW (MD Anderson Cancer Center) are among those that donated their time and expertise to create these important resources for the OM community. This campaign will progress as we continue to adapt and recover from having our lives put on hold to bring awareness to ocular melanoma patient and caregiver needs during this unstable time.

Visit the #CancerHasNoCurve Resource Center! 

Ocular Melanoma Support Groups

No one has to face ocular melanoma alone. Through new and existing partnerships, CURE OM is committed to providing the most helpful support resources available.

• In February 2020, CURE OM launched the Ocular Melanoma Support Alliance (OMSA) in collaboration with our partners at Colorado Retina Associates (CRA) and the University of Denver Center for Oncology Psychology Excellence (COPE). The OMSA explores the emotional and mental aspects of ocular melanoma diagnosis and treatment while providing hope, support and camaraderie for patients facing the rare disease. The group meets on the third Thursday of the month (June 18 this month) for a two hour session and admission is free. To learn more and get involved, OM community members can email Amanda Sisco, Supervisor of Oncology Services at asisco@retinacolorado.com.

Update on CURE OM's Historic Trip to the FDA

On January 27, 2020, the Melanoma Research Foundation’s (MRF) CURE OM initiative led by Senior Advocacy Officer Cassie Beisel conducted a first of its kind Patient-Led Ocular Melanoma Listening Session at the U.S. Food and Drug Administration (FDA). Patients, caregivers and medical professionals met with eighteen FDA leaders to share their stories and discuss the needs of the OM community. Their stories focused on the lack of standard of care, misdiagnoses, the need for single arm clinical trials, financial toxicity of the disease and the toll it takes on both patients and caregivers who have been impacted by this orphaned disease. Eleven individuals attended in person at the FDA and four community members phoned in to share their journeys. In direct response to the patients' call for action regarding their commonality of misdiagnosis, the MRF has been invited to participate as a patient advocacy voice on the Collaborative Community for Ophthalmic Imaging (CCOI). The hope is to advance earlier detection of OM through AI interpretation.

Due to COVID-19, the FDA had to put the official report on hold to focus on the immediate needs of the pandemic. The MRF is excited to announce that the report from that session is now available on the FDA website and the MRF’s website!

Click here to read the Executive Summary from the first-ever FDA Patient-Led OM Listening Session

#GetNaked

The Melanoma Research Foundation unveiled the 6th annual #GetNaked campaign on Melanoma Monday, May 4th, 2020! #GetNaked is the MRF's flagship awareness campaign promoting the importance of full body skin checks for early detection of cutaneous (skin) melanoma. This year's campaign was shared on the MRF website, all across social media and is even currently broadcast as a video PSA in Times Square! The 2020 campaign features Dr. Ellen Marmur, a renowned NYC dermatologist as well as a melanoma survivor. Dr. Marmur's unique perspective as a melanoma survivor influences the dedication and compassion that defines her approach to patient care and you can read her inspiring story here.

The early success of the #GetNaked campaign inspired the creation of the #EyeGetDilated campaign in 2015, promoting the life-saving importance of a yearly dilated eye exam for ocular melanoma early detection. Ocular melanoma can often have no symptoms until the tumor grows large enough to create vision disturbances, but it can be detected during a routine dilated eye exam. Through the #EyeGetDilated campaign, CURE OM encourages everyone to include this fast and easy exam along with a visit with your doctor, dermatologist and dentist each year. Stay tuned for Ocular Melanoma Awareness Month in November to see more of the #EyeGetDilated campaign, and order (for free!) CURE OM's "checklist" postcards to increase OM awareness in your community! As businesses begin to reopen, you can place these postcards (with permission) at your doctor's office, workplace, local coffee shop or anywhere else you can increase OM awareness in your community.

Uniting the International OM Community

On Thursday, May 14, the founders of CURE OM, Ocumel UK, Ocumel Irl, and Ocumel Canada met virtually for an international discussion around COVID-19 and its effects on the international OM community. This was the first of a series of meetings planned to unite the OM community regardless of location or borders. United in research, patient advocacy and education, these four organizations continue to work tirelessly for those battling ocular melanoma in their home countries, and now, collectively, are battling as a unified international front during and beyond the COVID-19 era. 

April 30 in 30

When the MRF made the difficult but necessary decision to postpone our springtime events - including the annual CURE OM Symposium - in response to social distancing requirements, the team launched April 30 in 30, a month-long series of virtual events to keep our community engaged, informed, entertained and healthy. In partnership with generous volunteers, business owners and community partners, hundreds of participants enjoyed fitness classes, art lessons, kid-friendly science demonstrations, cooking classes and live webinars with experts in melanoma, wellness, emotional support and more. Through this exciting month-long series, our community raised $15,000 to support medical students studying melanoma - enough to fund five medical student research grants! 

On April 28, CURE OM Co-Founder and Director Sara Selig, MD, MPH joined MRF Program Officer for Rare Melanoma Subtypes Lauren Johnston, MSW for a live Ocular Melanoma Info Session on Facebook Live. Thank you to everyone who joined the live discussion, which has now been viewed over 1,800 times! If you weren't able to join live, you can watch the recorded presentation here.

Thank you to everyone who participated in our first-ever April 30 in 30 event series!

Ocular Melanoma in Huntersville, NC

Strides are being made in the fight against ocular melanoma in North Carolina! OM affects about six people per one million each year but in the Huntersville, NC area alone, there are over 20 diagnosed cases, warranting further investigation into the elevated number of diagnoses.

The North Carolina State Senate passed the first reading of An Act Appropriating Funds to Study and Abate Ocular Melanoma in Northern Mecklenburg County (NC), with the primary sponsor being Natasha Marcus, NC Senate District 41. The bill, still in the early stages of the legislative process, includes a $100,000 fund from the Department of Health and Human Services to be allocated to the Nicholas School of the Environment at Duke University for the 2020-2021 fiscal year. The grant would fund the study of potential causes of and solutions for abating ocular melanoma in the towns of Huntersville and Cornelius and the surrounding area.

The MRF is proud to support the continued efforts of those in the Huntersville area! Click here to learn more about the legislation and how it can advance our understanding of ocular melanoma in North Carolina and beyond.

The MRF at the COVID Advocacy Exchange

In response to the unprecedented and evolving situation related to the COVID-19 pandemic, the MRF has joined our partners at Bristol Myers Squibb, GRYT Health and advocacy organizations across the globe at the COVID Advocacy Exchange. This virtual platform brings together organizations supporting multiple disease types to share resources and information that may be helpful during the current health crisis. Participants can visit the MRF's virtual booth 24/7, and live panel discussions will be hosted every Thursday featuring experts from a wide variety of patient advocacy organizations.

Register today for the COVID Advocacy Exchange and be sure to "visit" the MRF booth in the virtual exhibit hall! 

Below is a sample of recent news related to ocular melanoma.

“Study Finds New Clues in Ocular Melanoma” SCOOP Health

“Engaged Couple to Host Digital Concert on Original Wedding Date," Fox 17

"Considerations for the Management and Triage of Ocular Oncology Cases During the COVID-19 Pandemic," American Association of Ophthalmic Oncologists and Pathologists

"IDEAYA and Pfizer to Evaluate Combo of IDE196 and Binimetinib," thepharmaletter

"Bevacizumab Increases Visual Acuity in Ocular Melanoma Patients Treated with Plaque Radiotherapy," Healio

"Nonprofit Created to Help Get Answers About Rare Cancer Cases in Lake Norman," WSOC