2017-05-15T11:39:18-07:00 2016-12-31 990EZ 2016-01-01 383207136 National Neutropenia Network NATI 8773267117 US PO Box 1693 Brighton MI 48116 Kate Bottiger Director 5172940736 2017-05-15 204.73.55.132 2016 2021-01-29 14:40:06Z X X neutropenianet.org X X 46056 X 31837 13570 0 9 0 0 0 0 0 0 0 0 0 0 640 46056 2025 0 0 18058 0 1783 27160 49026 -2970 26644 150 23824 25644 23824 0 0 1000 0 26644 23824 0 0 26644 23824 The primary purpose of the National Neutropenia Network is to promote awareness education and research and provide a support system for individuals with severe chronic neutropenia and their families through a national resource network. The Neutropenia Family Conference is a life-changing event for patients and families. The Conference gives them the rare opportunity to meet with expert physicians who have treated many patients with neutropenia as well as devoting many years of their professional life to research related to this bone marrow failure condition. Private patient-physician consultations take place at our conference and for some patients these meetings result in life-changing advice. In addition to educational sessions, programs are designed to give patients and families plenty of time to meet and mingle. With the isolation that comes from living with a rare disease like neutropenia, this is a rare and wonderful opportunity. Children had a fantastic time at Neutropenia Kids Kamp where activities centered on understanding their disease are an important part of the program while having fun is the centerpiece. They leave camp with new friends and with a sense of belonging that often eludes them in their daily life. Our Family Conference also give patients access to the professional staff at the Severe Chronic Neutropenia International Registry. Many patients have worked with the staff for decades but never met them. This is a moving and meaningful experience for both staff and patients. Many of our patients experience major financial challenges as part of living with a rare disease. Some face daunting medical bills and income loss as they grapple with neutropenia. They cannot attend the Conference without financial assistance. 17230 38157 With the internet serving as the primary information source for patients seeking knowledge about their neutropenia, our website Neutropenianet.org provides a reliable resource to help them sort through the confusion and misguided advice that can come from visiting various social networking sites. Neutropenianet.org provides the latest information related to diagnosis and treatment of neutropenia in a language that is accessible to the layperson. Information from our website is often used by patients to help educate their physicians who rarely have any experience treating this disease. In 2016 we mailed out well over a hundred Patient Information Packets requested through our website. The packet includes: a patient handbook authored by expert physicians and a customizable ER card to present to hospital emergency personnel, and our most recent newsletters. Information packets are shipped at no cost to patients and families. The website gives patients who cannot attend the Conference an alternate option as they can watch videos of educational sessions presented by top experts on neutropenia at the Family Conference. Patient stories are another popular feature of our website. The firsthand knowledge of the struggle other patients face eases the isolation that comes from living with an extremely rare disease. We respond personally to hundreds of inquiries from patients and families seeking specific information or guidance related to their neutropenia. In 2016, we had more than 20,000 new visitors to our website with average page sessions nearly two minutes. More than 4,500 were return visitors to our website. For some patients their visit to our website opens up a new path for them, one that leads to medical information and care that changes their life. 0 860 The National Neutropenia Network produces a newsletter filled with information of clinical interest and medical value to patients. We include stories on the latest treatment and features on individuals with exceptional experiences managing their neutropenia. It reaches close to 800 patients. For those patients who do not use the internet, many of them seniors, the newsletter is a valuable benefit. 0 1843 40860 Kate Bottiger Chair 2 0 0 0 Sharon White Director 1 0 0 0 Taylor Carlton Treasurer 1 0 0 0 Lucy Lyman Director 0 0 0 0 Mariel Lewis Director 2 0 0 0 Rajan Lakhia Director 1 0 0 0 Krista Moroder Director 2 0 0 0 Ron Bloxham Director 1 0 0 0 Marylee Reeves Executive Director 15 6350 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 MI Lopez Business Services PO Box 1693 Brighton MI 481169998 8105997664 0 0 0 0 0 0 0 0 0 0 0 NONE NONE 1 X 52718 3069 49934 51400 31440 188561 8385 0 21041 15078 14607 59111 61103 3069 70975 66478 46047 247672 35000 10000 45000 0 0 0 35000 10000 45000 202672 35 16 12 11 9 83 35 16 12 11 9 83 61138 3085 70987 66489 46056 247755 0.81803 0.86083 0.00034 0.00041 X Form 990-EZ, Part I, Line 8 Sale of memorabilia Form 990-EZ, Part I, Line 10 Form 990-EZ , Part 1, line 10 - Financial assistance grants for patients with significant financial challenges that prohibited them from attending the family conference without support. These grants covered conference costs such as lodging, meals and in some cases help with travel. Form 990-EZ, Part I, Line 16 Form 990-EZ line 16 - Other expenses include: primary conference costs as well as website management, office supplies and patient support programs. Form 990-EZ, Part I, Line 20 Due to the Chase Bank on line payment on 12/02/2015 of $150.00 and a second on line payment of $150.00 on 12/31/2015, the double payment confused the year end balance. In the 2015 part 1 line 20 the adjustment of $150.00 was recorded and now in the 2016 part 1 line 20 the item is reversed.