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Rare Disease Day
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From the desk of MRF CEO Kyleigh LiPira:
Today is Rare Disease Day. It is a day to raise awareness and improve access to treatment and medical representation for individuals with rare diseases and their families. In the melanoma community rare forms include ocular, mucosal and pediatric melanoma. For patients impacted by the rare forms of melanoma, they often feel isolated, marginalized and left with few options. As an advocacy organization dedicated to patients and their families our goal is to provide the resources these populations need in order to thrive. This means providing education on their diagnosis to funding research dedicated to finding more effective treatments to advocating on Capitol Hill on issues that impact rare diseases – like access to clinical trials. This month we have shared patient stories to help inspire and encourage our community with the rarer forms of melanoma. You can read some of these impactful patient testimonials here.
We have many resources available that you can access from our full educational literature library. Also, as we continue to navigate COVID-19 we have created a robust on-demand library of webinar resources for our rare subtype community which currently includes ocular, pediatric, psycho-social support and more. You can view them here.
Join in on the social media conversation using #RareDiseaseDay and help the MRF recognize this important day!
For questions regarding our Education Program please email education@melanoma.org.
With gratitude,
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Advocacy Days: Registration Closes Today!
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The 2022 Virtual Advocacy Days is just one week away on March 7-11, 2022 and registration closes TODAY! The MRF's Advocacy Days is the largest melanoma advocacy event of the year and unites melanoma advocates from across the country to meet with members of Congress to urge them to make melanoma a national priority. The MRF is honored to welcome Representative Carolyn B. Maloney (NY-12) as plenary speaker on March 7, headlining a full agenda of guest speakers and advocacy experts. Click here to view a video invitation and the importance of sharing your story from Adam Taliaferro, Esq., former New Jersey State Assemblyman & Strategic Alliance Lead, Bristol Myers Squibb. For questions about the event or the MRF’s Advocacy program, please email advocacy@melanoma.org.
The MRF thanks its Advocacy Days sponsors Bristol Myers Squibb, Genentech, Pfizer, Amgen, Iovance Biotherapeutics and Merck.
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The Miles for Melanoma Season is Here!
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Following an incredible season in 2021 that marked our return to in-person events and raised over $800,000 for melanoma research, education and advocacy, the first run/walks of 2022 are now open for registration! Click below to visit the brand new Miles for Melanoma website, watch a recap video from last year's events and view the entire 2022 event calendar. If you are part of our Florida, Washington, DC or Boston communities, registration is now open for your events! Form a team to start fundraising today, and we will see you this spring!
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Join the Pediatric Melanoma Summit in July
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While we eagerly anticipated the Pediatric Melanoma Summit in January, due to the recent surge in COVID-19 cases, Omicron variant concerns and out of an abundance of caution, the Melanoma Research Foundation (MRF) rescheduled the Pediatric Summit until July 22-24, 2022. Registration for the new event is now open, and participants who previously registered for the January date will need to update their reservation. Click here to learn more about the event including health and safety protocols at Great Wolf Lodge, how to make a new hotel reservation and more. For any additional questions about the Summit or the MRF's pediatric melanoma program, please email education@melanoma.org.
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Sign Up to Be a Patient Research Grant Reviewer
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In 2019, the MRF began incorporating a patient-centric approach into its grant review process. Operating in collaboration with a traditional peer review panel of scientific professionals, the patient review panel is made up of men and women, individuals with or without formal science training, and/or melanoma patients, caregivers, friends or family. The goals of incorporating the patient perspective into the grant review process are to ensure that the melanoma patient’s point of view is critically represented during the grant proposal process and increase the pool of skilled melanoma advocates to participate in other scientific advisory or review committees at cancer centers or various drug development stakeholders such as the FDA, NCI, DoD, PCORI, and/or biotech/pharmaceutical companies. For more information about the joining the grant review process, click below to download the 2022 application:
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What the First FDA Approved OM Treatment Means for our Community
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On January 26, 2022, the U.S. Food and Drug Administration announced the approval of KIMMTRAK (tebentafusp-tebn), the first and only FDA-approved treatment for metastatic uveal melanoma, developed by Immunocore. In the weeks that followed, researchers, physicians, patients and caregivers in the CURE OM community offered their perspectives on the importance of this moment in a series of guest blogs and webinars. Visit the page below to hear from our advocates:
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Play a Round of Golf to Help End Melanoma
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The MRF has partnered with the Joan L. Kidd MD Fight for Life Foundation’s 2022 Fight for Life Golf Series. Golfers of all skill levels are invited to play at their home golf clubs or any golf course in the U.S. to support melanoma research, education and advocacy. During the tournament’s spring series, held April – early June, golfers can book a tee time at their preferred course during tournament weekends. Log your scores via the Chipd In mobile APP and earn cumulative ranking points each week for a chance to qualify for the in-person National Championship in Orlando, Florida June 3-5. Entry fees will be donated to support the MRF’s work to advance the research and science of melanoma.
For more tournament information, spring series dates and to register, click below.
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Upcoming Events
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- June 3, 2022: MRFBC Bi-Annual Meeting
- June 4, 2022: Miles for Melanoma Memphis
- June 11, 2022: Miles for Melanoma Denver
- August 7, 2022: Miles for Melanoma Cleveland
- August 20, 2022: Miles for Melanoma Twin Cities
- August 27, 2022: Miles for Melanoma Philadelphia
- September 18, 2022: Miles for Melanoma New Jersey
- September 25, 2022: Miles for Melanoma Chicago
- October 1, 2022: Miles for Melanoma New York City
- October 8, 2022: Miles for Melanoma San Diego
- October 29, 2022: Miles for Melanoma Los Angeles
- November 5, 2022: Miles for Melanoma Atlanta
- November 13, 2022: Miles for Melanoma San Francisco
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