Manage episode 292678351 series 2922340
The Health Design Podcast and Moyez Jiwa tarafından hazırlanmış olup, Player FM ve topluluğumuz tarafından keşfedilmiştir. Telif hakkı Player FM'e değil, yayıncıya ait olup; yayın direkt olarak onların sunucularından gelmektedir. Abone Ol'a basarak Player FM'den takip edebilir ya da URL'yi diğer podcast uygulamalarına kopyalarak devam edebilirsiniz.
Ann’s interest in Pediatric Oncology began when, at age 43 she was diagnosed with osteosarcoma, a primary bone cancer that affects kids aged 10-25, and was treated in the Pediatric Cancer Center at Memorial Sloan Kettering. Like most adults, she was unaware of how little funding pediatric cancers receive, how great the suffering is, and how too often the youngest patients lose limbs, organ function and their lives to cancer. Ann began MIB Agents in 2012 when fellow osteo patient, Alyssa Divers, age 11 was sent home on Hospice. Ann rallied her friends to create an extraordinary NYC experience for Alyssa and her family in her last week of life. Today, MIB Agents Makes It Better (MIB) for kids with osteosarcoma through: ● Research: Funding through OutSmarting Osteosarcoma Annual Grant voted on by OS families with our Scientific Advisory Team. ● Education: Sharing through OsteoBites weekly webinar and podcast and through our Annual Conference which brings together all constituents to listen to the top researchers and innovators in osteosarcoma and collaborate for better, the Testing and Research Directory where to go to inform research or a personal treatment plan, and through our Book, “Osteosarcoma: From Our Families to Yours”. ● Programs: Writer Agents, international letters of encouragement to kids in treatment, Gamer Agents OS survivors game with those in treatment, Prayer Agents international prayer network for urgent and ongoing prayer requests, End Of Life Missions for OsteoWarriors who have no curative treatment options, Healing Hearts Bereaved Parents Program a 6-week grief course for osteosarcoma parents, Junior Board AYA affected by OS contribute greatly to MIB Agents direction and programs, and Ambassador Agents who survivors of OS and are trained to be Certified Peer Visitors to those in treatment or newly diagnosed. Our wholehearted belief is in advocacy with and for the entire disease community - researchers, clinicians, patients and their families. Understanding that all constituents working toward the common goal of “better” is the best and most expedient way toward improving outcomes.