BORN A HERO, Pfeiffer's Health and Social Issues Awareness
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Mission Statement
Our Mission is to accelerate innovation and research to improve the quality of life for patients with FGFR Syndromes.
About This Cause
Born a Hero Research Foundation: Accelerating Innovation for FGFR Syndromes Through our unique research registry, we study 15 FGFR syndromic craniosynostosis rare diseases, working to better understand the critical link between phenotypes and genotypes. By identifying which gene mutations cause specific symptoms, we aim to empower families with the knowledge to make informed decisions and seek early diagnosis and interventions. For families affected by FGFR Syndromes, time is of the essence. Delayed treatment can lead to severe, life-altering consequences, such as brain damage or paralysis. Born a Hero works closely with Centers of Excellence across the country to ensure that patients have access to specialized care, second opinions, and the necessary resources to navigate travel, lodging, and logistics. We connect families with multidisciplinary teams of experts who provide the best care for these complex conditions. In addition to supporting research and clinical care, Born a Hero is making a difference globally. We are working to bring students from around the world to train with top surgeons in the United States, further expanding knowledge and expertise in FGFR Syndromes. We are also proud to champion awareness at the community level. Our curriculum for schools, designed for pre-K through second grade, helps foster inclusivity by teaching children to celebrate all types of differences, including medical differences. By starting these conversations early, we can help create a more compassionate and understanding world. With your support, we can continue to make progress and change lives. Join us in this mission to improve outcomes for families living with rare diseases.