2026-01-20T01:02:07Z 2025-12-31 990EZ 2025-01-01 815444211 JANSENS FOUNDATION JANS 4024579886 PO Box 115 Elkhorn NE 68022 Penni Romero Administrative Official & Treasurer 4024579886 2026-01-20 2025 2025-03-06 01:10:19Z X https://www.thejansensfoundation.org/ X X 97679 X 93165 0 0 0 0 0 0 0 0 0 0 0 0 0 4514 97679 42734 11529 54263 43416 20364 63780 20364 63780 20364 63780 20364 63780 The miission of the Jansens Foundation is to bring awareness and support research in hope fo bringing about a cure to this debilitating skeletal condition. Jansen's Disease is an ultra-rare condition, affecting fewer than 30 patients worldwide, which often results in limited diagnosis and treatment options. Patient awareness: Develop and maintain website with information about the condition for people across the world to access. Patients and medical personnel from across the world (about 40 or more persons) can access contact information to seek out additional information regarding medical diagnosis, testing, and treatment. Maintain the foundations operation to meet the above objectives as well as objectives described below through independent contractors serving as Project Lead (2) and Administrative Official 0 41108 Empower the Jansens community and stakeholders by enhancing their capacity to define research priorities and engage in the CER process through training. By creating a structured framework for collaboration, we aim to establish best practices for involving ultra-rare patients, caregivers, and relevant community members (19 individuals) ultimately improving long-term outcomes in research and healthcare. Stipends awarded for completion of CER trainings. 0 5011 Establish collaborative partnerships for research prioritization through community engagement by forming an advisory board of a diverse group of community stakeholders to identify and prioritize key research questions. 0 7858 Establish collaborative partnerships for research prioritization through community engagement by sending a representative to national medical workshops engaged in bone research. 0 286 53137 Penni Romero Administrative Official & Treasurer 10.00 13500 0 0 Neena Nizar President & Project Lead 15.00 17500 0 0 Maegan Wallace Project Lead & Secretary 5.00 7750 0 0 false false false false false 0 false false 0 0 0 false false NE Penni Romero 3460 Piney Creek Dr Elkhorn NE 680224420 4025418065 false false false false false false false false false false false NONE 0 NONE 0 true X 0 0 0 0 3219 9065 6649 1266 97679 117878 0 0 0 0 0 0 0 0 0 0 0 0 3219 9065 6649 1266 97679 117878 0 117878 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 117878 0 1.00000 1.00000 X X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Part I, Line 16 NORD membership $50 State Biennial fees $28 Simple 990 Fee $50 Squarespace $285 Restaurants $114 (conference related) Restaurant $374 Medical Board dinner Zoom subscription $171 PO BOX renewal $188 USPS shipping $31Travel $172 (taxi, UBER, conference related) Parent Training stipends (19) $5011 Advisory Panel stipends $3500 Checks for business $55 Transfer error out of checking $1500 (returned in 2026)