Eyes on a Cure: Ocular Melanoma Patient and Caregiver Global Symposium

#EyeGetDilated

November marks the FIFTH #EyeGetDilated Campaign!

CURE OM will be inundating social media outlets to promote and educate about the importance of eye health. The goal is to raise awareness and encourage members of the overall community to include a dilated eye exam in their annual wellness routine. Early detection is key for so many eye diseases, including ocular melanoma.

If you’d like to participate, please re-post information from the CURE OM and MRF social media channels during the month to spread the news about the importance of dilated eye exams. You can also request our “Missing a Check?” postcards to take to your local doctors to include in their annual wellness reminders or download this flyer.

Places to hand out postcards/flyers:

• Primary Care Physician
• Family Physician
• Optometrist
• Dermatologist
• Coffee shops

To request postcards, please visit our educational literature library. Make sure to include the number of cards needed and a mailing address.

This year we are planning a fun twist on the sunglasses that are handed out after a dilated eye exam. Please feel free to encourage your friends, family and the larger community to have their eyes dilated and take photos of themselves with the sunglassses. For an example, see our Rare Melanoma Subtypes Officer, Lauren Johnston, at her annual dilated eye exam below. 

Meet Mark Weinzierl!

The MRF has been very fortunate to have representation at our highest level for our ocular melanoma community. Mark Weinzierl, OM patient and advocate, serves on the Board of Directors for the Melanoma Research Foundation and it’s both exciting and important to have a dedicated voice from this community in the organization's leadership. Read Mark’s story here and learn how his involvement with CURE OM led to his continued support of the MRF.  

Science

In September, Immunocore challenged its offices to raise funds for the MRF’s CURE OM initiative with its own Miles for Melanoma event. Over the month, three teams, more than 73 participants and over 150 donations were made throughout the company. Immunocore was able to raise over $14,000 and completed 5,812 miles. With offices both stateside and in the UK, the number of miles walked, biked and ran were equivalent to reaching all the way to the UK office and then returning to the states. It was an exciting partnership, and we look forward to more in the future!

Take Action

#EyeOnResearch—Power of the Patient Voice

The Melanoma Research Foundation (MRF) believes the perspectives and experiences of OM patients and survivors are vital to advancing research and improving care for OM patients. We need your voice and your #EyeOnResearch! We have three new opportunities for you to #GetInvolved and ensure that your input has a prominent place in finding a cure for OM.

Each of the opportunities below will be released separately over the remainder of 2020, with the first being #EyeOnAdvocacy, the OM Patient-Oriented Value survey.

The Ocular Melanoma Patient-Oriented Value Survey - Open until October 26

This survey is designed to gather information from patients on the current state of diagnostics, treatments and outcomes for OM. The information gathered from this brief survey will be used to identify gaps in coverage and ensure that treatments, diagnostic testing and surveillance are fairly covered by all insurance plans.

The Castle Biosciences Experience Survey - Opens October 27

In the United States alone, about 2,500 adults are diagnosed with OM on a yearly basis. Many of these patients have no prior experience with cancer and find themselves unsure of where to begin. In partnership with the MRF, Castle Biosciences will be conducting a survey to better understand the decision-making process of an OM patient to get prognostic testing and the perceived value of prognostic testing results. This will help Castle better meet the needs of the OM community at the vulnerable time of diagnosis. #EyeOnEducation

Patient Powered VISION Registry

The MRF’s CURE OM initiative is launching a new global patient registry, VISION, that will capture comprehensive information on genetics, disease characteristics, environment, types of treatments, physical outcomes and quality of life. This data will be used to inform research initiatives on policy, patient preferences and standards of care. By signing up to be a part of VISION, you are giving researchers and advocates access to unique, patient-centered data that will advance ocular melanoma treatment in a multifaceted way and use new findings to eventually support the development of a cure. #EyeOnResearch

November Gala

On November 5th, the MRF will be hosting its 6th Annual Virtual Chicago Gala!

Honorees for this event include the following:

• Humanitarian Award: Pedram Gerami, MD, Northwestern Medicine, Professor Feinberg School of Medicine
• Compassionate Care Award: Carolyn I Jacob, MD FAAD and Rachel N Pritzker, MD FAAD, Chicago Cosmetic Surgery and Dermatology
• Courage Award: Nicole Bruno, Joni Kamstra and Nancy Sreenan

YOU can be a part of giving back to the Chicago melanoma community by joining us for a virtual night of fun and celebration. Be a part of funding a grant 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 here.

Miles for Melanoma

There’s still time to join a Miles for Melanoma virtual 5k! Below are the dates for upcoming events across the US. All OM teams will have their funds raised directed to CURE OM.

Miles for Melanoma NYC - October 31, 2020 - Register Here

Miles for Melanoma San Diego - November 7, 2020 - Register Here

Miles for Melanoma San Francisco - November 14, 2020 - Register here

Giving Tuesday

Let's save the date for #GivingTuesday! Each year our advocates, patients, caregivers and community members come together to do good and support the melanoma community. Every dollar can help make a difference and will allow the MRF to support melanoma patients across the country. This past year was difficult and full of challenges, but it would not have been possible without YOU! We hope you will join us for another #GivingTuesday on Tuesday, December 1, 2020. Follow this link to directly donate to CURE OM.

MyVictory Wellness

The MRF is excited to have this new partnership with MyVictory, a fitness-streaming platform for cancer survivors and those who support them, that has been made possible by the support of Bristol Myers Squibb. They have created a survivorship program to help the 1.3 million melanoma survivors in the United States. 

We know the journey of survivorship doesn’t end when you walk out of your doctor's office. We are excited to offer a promo code (MRF-6MonthsFree) that can be used at mrf.myvictory.com, to give you free membership and access to over 1000 classes in their On-Demand Library. Free membership is available for your first six months and only $9.99/month thereafter!

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

"One Case of a Rare Eye Cancer Was Weird. When 4 More Appeared, the Town Knew Something Wasn't Right," Mother Jones

“TriSalus Life Sciences Lays Out Therapeutic Strategy Upon Acquisition of First Therapeutic Candidate” BusinessWire

“Encode Ideas, L.P. to Host Key Opinion Leader Conference Call with Dr. Jonathon Zager, Principal Investigator for Delcath System's Phase 3 FOCUS Study," yahoo!fiance

"Investigating Disparities in Eye Cancer Treatment," Stanford Medicine

"How to Prepare for a Virtual Visit with your Doctor," Dana-Farber

"Predictors of Long-term Anxiety and Depression in Uveal Melanoma Survivors: A Cross-lagged Five-year Analysis," docwirenews

"Circulating DNA From Tumor Could Predict Immunotherapy Outcome," Technology Networks

"Targeting Epigenetic Modifications in Uveal Melanoma," MDPI

"Interview: A Dual Inhibitor Approach Shows Promise in Eye Cancer," docwirenews

"House Appropriations Committee Includes $20 million in Defense-funded Melanoma Research," Melanoma Research Foundation 

"Ophthalmologists Called to Catch Cancer Earlier," medscape

"Novel PKC Inhibitor Trial to Expand Its Cohort of Patients with Solid Tumors," Targeted Oncology

"Unique Geospatial Accumulations of Uveal Melanoma," American Jounral of Ophthamology