CURE OM's 10th Anniversary!

The MRF’s CURE OM initiative is celebrating 10 years of serving the ocular melanoma (OM) community! Every 10th day of the month, CURE OM will be posting highlights and stories from the past 10 years on social media. Honoring the past 10 years will continue through the next few months leading up to November’s #EyeGetDilated campaign and virtual symposium during which we will look back at all we have accomplished in the past decade while catalyzing the research we know is needed to take us into the next decade focused on a cure.

Our program would not be here today without the OM community’s support and involvement. Thank you for the continued voices, advocacy and opportunity to collaborate in advancing our mission to find a CURE.

CURE OM Initiative's VISION Registry Launch

In honor of its 10th Anniversary and representing a significant advance in OM research, the MRF's CURE OM initiative launched the VISION Registry on May 10, 2021. VISION is a first of its kind patient reported OM registry. This historic patient-driven research tool allows for OM patients and caregivers to directly participate in groundbreaking research to help OM physicians and scientists increase knowledge, improve the patient experience, develop more effective treatments and, one day, a cure for OM! Read the official launch announcement to learn more and to join the VISION Registry, click below.

Eyes on a Cure: Ocular Melanoma Patient and Caregiver Mini Summit: Spring Updates

This past March, CURE OM hosted its first virtual mini-summit. More than 150 people participated in this free, virtual, educational event. Two panels of speakers presented on important topics for the community including the current clinical trial landscape and the patient journey. Speakers from MD Anderson Cancer Center, UPMC, Cedars-Sinai and Thomas Jefferson University spoke to the community and answered questions during the event on all topics ranging from vision loss, support services for low vision, surveillance and the latest update on tebentenfusp.

For those recordings, please visit the MRF’s YouTube channel.

Save the Date! 10th Annual Eyes on a Cure: Patient and Caregiver Symposium

The CURE OM initiative is excited to host the virtual 10th Annual Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium.

The event will be held November 20-21, 2021. We are excited to celebrate CURE OM’s 10 year anniversary as a program specifically for the OM community to showcase where we’ve been, where we are and where we are going.

Stay tuned for more information, and save the date for March 25-27, 2022 for our next in-person symposium in Tampa, FL with Moffitt Cancer Center!

ARVO Presentation

This past fall, CURE OM partnered with Castle Biosciences to sponsor a patient survey to better understand patient preferences related to prognostic testing. More than 200 OM patients completed the survey. The findings led to a poster presentation at the annual ARVO conference presented by Basil Williams, MD.

Thank you to all of those who participated in this survey. The MRF continues to push the patient voice in all of its science initiatives, and this was an exciting opportunity to showcase that voice on an international level.

Science: Grant Review Process

The MRF has recently posted its 2021 MRF grant Request for Proposals (RFP). Since 1998, the MRF has funded more than $20.1M in research- $2.1M of which has been focused on OM specifically! This year, the MRF RFP is focused on junior investigators. The application deadline is July 12, 2021 at 5pm ET.

Patients and caregivers are also incredibly valuable to the grant review process. Melanoma patient advocates are invited to participate in the grant review process to share their perspective on which areas of research should receive grant funding. Formal scientific training is not required, but those with such a background are welcome to apply as well. Additional information is available on the Participate in Science portion of the MRF website. Completed advocate reviewer applications are due by July 30, 2021. For more information, please contact Robyn Burns at rburns@melanoma.org.

2021 MRF Advocacy Days

This year’s MRF Virtual Advocacy Days took place March 1-5, 2021. This event was composed of over 125 advocates from across the country participating in a half-day virtual briefing, an advocate open-mic night, a Congressional Town Hall with Congresswoman Carolyn Maloney (NY-12) as well as Congressional meetings throughout the week. Over 50 advocates attended 68 meetings and represented 22 states. The MRF advocates educated their representatives on all aspects of melanoma, including the subtypes of OM, mucosal and pediatric melanoma, and pushed for support to increase funding from the Department of Defense Melanoma Research Program, the NIH/NCI and the CDC’s Skin Cancer Prevention Activities, as well as finalizing the FDA’s proposed rule on banning tanning devices for America’s youth.

To stay up to date on all our advocacy initiatives, follow the link below.

New Educational Material

The MRF is excited to launch its new Truth About Tanning postcard! This new educational piece brings awareness to the impact of tanning and skin melanoma. This summer, remember to wear your shades and sunscreen while being sun-safe. Unfortunately, OM patients are still at risk for skin melanoma so it is important to always practice sun-safety! A huge thank you to our patients who allowed us to feature photos of their cancer experience.

To see the full postcard, click here. For access to our other educational materials including the CURE OM Patient Guide, please click the link below.

#GetNaked: Darren Reilly

Our 8th annual #GetNaked campaign launched on May 1st, 2021 with a billboard in Times Square and models from our MRF family who have #skininthegame. The campaign highlights Melanoma Awareness Month and includes information on being sun safe as well as bringing awareness to the rare subtypes including ocular melanoma. The MRF’s Senior Advocacy Officer and melanoma survivor Cassie Beisel shared her story of being a melanoma survivor. The MRF’s OM thriver, Liz Reilly, and her husband, melanoma survivor, Darren Reilly, shared their stories and scars to showcase the importance of sun safety.

The campaign has focused on education and advocacy efforts in the melanoma space, including FB Live sessions with dermatologists, and tool kits for constituents to download and use to educate the public about all melanoma subtypes.

For access to those Facebook live sessions, please click the link below.

Ocular Melanoma Support Groups

Denver Support Group

CURE OM, Colorado Retina and the University of Denver have teamed up to provide virtual support groups through Zoom on the fourth Thursday of each month from 6:00-8:00pm MT. These sessions are open to any patient with ocular melanoma. For more information, contact education@melanoma.org.

Thomas Jefferson University OM Support Group

Join TJU social workers and other OM patients and caregivers to meet monthly for an online support group. These sessions meet of the first Wednesday of each month from 1-2pm ET via Zoom. For more information, please contact education@melanoma.org or visit our website.

Resource: Ask a Nurse

Have a question about melanoma? Having trouble understanding your pathology report? Wondering how to better manage side effects?

Ask the MRF’s Nurse, Amanda Livengood! Ms. Livengood earned a BS in nursing from Drexel University in Philadelphia, PA and for the past seven years has been working as a clinical research nurse in the melanoma center at Dana-Farber Cancer Institute in Boston, MA. In this role, Ms. Livengood monitors patients enrolled in melanoma clinical trials. In her spare time, she tries her best to keep up with her two young daughters and enjoys music and documentaries.

Ms. Livengood can be reached at askanurse@melanoma.org.

Imerman Angels

The MRF has been partnering with Imerman Angels for peer mentoring for patients and caregivers in the OM community. These one-on-one relationships give a cancer fighter or caregiver the chance to ask personal questions and get support from someone who has been there before. Mentor Angels can lend support and empathy and help cancer fighters and caregivers navigate the system, determine their options and create their own support systems. Frequently, caregivers experience feelings similar to those of the person facing cancer. Mentor Angels can relate while being sensitive to the experience and situation.

Attend a Gala

The MRF gala series in Denver, Chicago and New York are high visibility, inspirational events that strengthen the community and provide mission critical funding for melanoma research. 2021 brings us a year of celebrations, starting with the MRF’s 25th Anniversary, the 10th Anniversary of the Denver Gala and CURE OM and the 20th Anniversary of the New York Gala.

These celebrations are a thank you and congratulations for all the hard work of the last 25 years in the fight against melanoma. With more than $20 million raised for melanoma research, and more than $2 million to OM specifically, these funds have helped bring over 16 combined treatments to market with melanoma immunotherapy treatments now leading the way for other cancers. The MRF is marking its 25th anniversary by embracing what our founder wanted us to all hold onto: HOPE!

This year, we will be celebrating the hope that brought us to where we are today while speaking to the research that still needs to happen to bring about a cure. We will look back at our past physician and researcher honorees as well as check in on our past patient courage awardees.

Denver 10th Anniversary Gala
September 23, 2021
Infinity Park Events Center

New York 20th Anniversary Gala
October 14, 2021
Cipriani Broadway

Chicago 7th Annual Gala
November 4, 2021
Revel Fulton Market

Miles for Melanoma

The MRF community joined us for our second annual Virtual Melanoma Awareness Month Miles for Melanoma event during May. Our participating teams logged more than 7k miles during the month, all while inspiring the community to learn more about melanoma. The month-long event offered team fundraising challenges and other opportunities to stay healthy and educate the community about all types of melanoma.

The formal 2021 Miles for Melanoma event series has begun with virtual events and will transition to in-person races this August. Registration is open, so click below to see the 2021 Miles for Melanoma season and we look forward to seeing you at an event this year!