2016-08-12T14:00:54-07:00 2015-12-31 990EZ 2015-01-01 383207136 National Neutropenia Network NATI 5172940736 US PO Box 1693 Brighton MI 48116 Marylee Reeves President/Director 5172940736 2016-05-14 2015 2016-12-15 16:53:06Z X X neutropenianet.org X X 67302 X 51400 14138 0 11 0 0 0 0 0 0 0 1753 813 940 0 66489 4745 0 16795 4619 0 3891 38911 68961 -2472 29266 -150 26644 X 29266 25644 0 0 0 1000 29266 26644 0 0 29266 26644 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. Twenty eight private patient-physician consultations took place at the 2015 Family Conference. For some patients these meetings resulted 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. The 2015 Family Conference also gave 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 was 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. We were able to help eleven families attended the 2015 Family Conference with the help of hardship grants awarded to cover partial expenses. 4745 50280 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 2015 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 2015 we had over 25,000 new visitors to our website with average page sessions nearly two minutes. Over 6,000 returning visitors spent an average of 2.58 minutes per visit. 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 1588 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 2105 53973 Kate Bottiger Chairman 1.5 0 0 0 Sharon White Secretary 1 0 0 0 Taylor Carlton Treasurer 1 0 0 0 Lucy Lyman Director 0.5 0 0 0 Mariel Lewis Director 2 0 0 0 Rajan Lakhia Director 1 0 0 0 Krista Moroder Director 1 0 0 0 Ron Bloxham Director 1.5 0 0 0 Marylee Reeves Executive Director 30 15600 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 5175464701 0 0 0 0 0 0 0 0 0 0 0 NONE NONE 1 X 42236 52718 3069 49934 51400 199357 8280 8385 0 21041 15078 52784 50516 61103 3069 70975 66478 252141 35000 35000 0 0 0 0 35000 35000 217141 30 35 16 12 11 104 30 35 16 12 11 104 50546 61138 3085 70987 66489 252245 0.86083 0.99946 0.00041 0.00054 X Form 990-EZ, Part I, Line 8 Sale of t-shirts and books at Neutropenia Family Conference Form 990-EZ, Part I, Line 10 We give financial support through patient assistance grants to individuals and families who cannot afford the full cost of attending the Neutropenia Family Conference. The grants are usually partial but make attendance possible for families experiencing the stress and financial difficulties of living with a rare and chronic disease. This can be life-changing for some patients as it can lead to better understanding and more effective management of their chronic neutropenia. Form 990-EZ, Part I, Line 16 "Other expenses" are primarily related to the cost of producing the Neutropenia Family Conference. They include the travel and lodging expenses of physicians, presenters and Conference staff; audio visual services; the children's two day camp program; printed materials distributed at the Conference and website costs related to registering and tracking participants. They also covered the expense of professionally videoing Conference presentations and educational sessions which are now available for all who visit neutropenianet.org. Form 990-EZ, Part I, Line 20 Chase bank recorded a $150.00 expense on 12/31/15 that should be a 2016 expense Form 990-EZ, Part II, Line 24 Accounts Receivable from 2015 carried to 2016