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We extend our heartfelt gratitude to the Board of Directors, the RMC community, sponsors, participants, and volunteers for contributing to the success of 2023, making it an extraordinary year. As we take a moment to reflect on the past year, we are excited to share our highlights with you as the RMC Movement continues to flourish. We extend our heartfelt gratitude to the Board of Directors, the RMC community, sponsors, participants, and volunteers for contributing to the success of 2023, making it an extraordinary year. As we take a moment to reflect on the past year, we are excited to share our highlights with you as the RMC Movement continues to […]<\/p>\n","protected":false},"author":6,"featured_media":1851,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-2256","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-media"],"acf":[],"_links":{"self":[{"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/posts\/2256","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/comments?post=2256"}],"version-history":[{"count":2,"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/posts\/2256\/revisions"}],"predecessor-version":[{"id":2258,"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/posts\/2256\/revisions\/2258"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/media\/1851"}],"wp:attachment":[{"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/media?parent=2256"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/categories?post=2256"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/chrisjohnsonfoundation.org\/wp-json\/wp\/v2\/tags?post=2256"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
\nOur advocacy continues through:
\nAwareness<\/strong>
\nIn our role as patient advocates, we are pleased to announce our recent affiliations with two esteemed organizations this year: the Kidney Cancer Association, and the National Cancer Institute \u2013 MyPart. Together, we are dedicated to collaborative efforts aimed at increasing awareness of renal medullary carcinoma (RMC), dispelling misconceptions surrounding the benign nature of sickle cell trait and identifying effective strategies to address health disparities. Our overarching goal is to remove barriers for patient seeking access to clinical trials.
\nWe are unwavering in our commitment to ensure that geographical location or insurance coverage does not impede individuals diagnosed with RMC from gaining access to institutions with cutting edge research. To highlight our dedication and engagement, we participated in several impactful events throughout the year:
\n\u2022\tFebruary 25th \u2013 Participated in NORD Rare Disease Day
\n\u2022\tFebruary 26-28th – Participated in the AUA meeting and lobbying in Washington DC
\n\u2022\tMarch 25th – Successful 10th Annual 5K Keepin\u2019 It Renal Virtual Run\/Walk. (attracting approximately 400 participants in person and virtually)
\n\u2022\tJune & December \u2013 Fish City Grill Fundraiser.
\n\u2022\tSeptember – Milton Wade actively participated in a public hearing, in New York City discussing Proposal 968-A. In October, the proposal was unanimously passed. The significant development will play a crucial role in providing support and assistance to individuals with sickle cell disease and sickle cell trait.
\n\u2022\tAttended KCIA Full Alliance Quarterly Meetings
\nEducation<\/strong>
\nSpeaker at:
\n\u2022\tJuly 18th-23rd\u2013 Speaker at the 10th Annual Sickle Cell Patient and Family Educational Symposium
\n\u2022\tSeptember 9th \u2013 Speaker for Kidney Cancer Association Virtual Symposium.
\n\u2022\tNovember 9th-11th \u2013 Speaker at the IKCS: North American Symposium
\n\u2022\tDecember 7th-8th \u2013 Participated in advocacy panel at Bridging the Gap: SMARCB1 Mutated Tumors Conference sponsored by National Cancer Institute and Texas Children\u2019s Hospital
\n\u2022\tServed on Kidney Cancer Association patient care advisory council.
\n\u2022\tWorked with Boston University School of Public Health (BUSPH) to create a sickle cell trait campaign
\nResearch<\/strong>
\nAdvocacy and research efforts have led to a deeper understanding of why renal medullary carcinoma (RMC) occurs in some individuals with sickle cell trait and not in others. By bridging the gap between advocacy and scientific inquiry, we are advancing our understanding of the relationship between sickle cell trait and RMC, paving the way for more targeted interventions, improved awareness, and ultimately, better outcomes for individuals at risk.
\n\u2022\tNovember – Attended the International Kidney Cancer Symposium sponsored by Kidney Cancer Association in Austin. Researchers from all over the world discussed their kidney cancer research.
\n\u2022\tUT MD Anderson Cancer Center opened a third clinical trial specifically designed for RMC and began working on the 4th trial. RMC Average survival rate has improved to 15 months.
\nSupport<\/strong>
\nThe year 2023 marked continued strength and resilience of the world\u2019s only renal medullary carcinoma (RMC) support group. Dedicated to serving RMC patients, caregivers, and those who have lost a loved one to RMC, this virtual group convenes monthly on the 2nd Tuesday. To better accommodate our global RMC community, we introduced an additional support group session on the 4th Saturday of each month.
\nThe reach of our RMC Support Group has expanded beyond the borders of the United States, now extending to individuals in Colombia, Australia, the United Kingdom, Greece, Brazil, and Canada. This growth underscores the importance of fostering a global network of support, ensuring that individuals facing the challenges of RMC can connect, share experiences, and find solace irrespective of their geographical location. As we move forward, our commitment to provide a supportive and inclusive space for the RMC community remains firm.
\n\u2022\tDonated $10,000 in financial support to patients traveling to Houston for treatment and to other patients in need to offset medical expenses.
\n\u2022\tMarch – Donated $5,000 to UT MD Anderson Cancer Center to continue RMC research
\n\u2022\tContinue to offer support to 23 patients that have been diagnosed with RMC. Remain in contact with 16 families that have lost loved ones to RMC.
\n\u2022\tProvide around the clock support to RMC patients and their families, helping those who have experience or are currently facing the challenges of a loved one diagnosed with RMC.
\n\u2022\tWe continue to connect RMC patients with renowned physicians at UT MD Anderson Cancer Center.
\nOur mission is grounded in the belief that through continued support, advocacy and collaboration, we can make a lasting impact on the lives of those affected by RMC.<\/p>\n","protected":false},"excerpt":{"rendered":"