2015-05-15T00:48:48-07:00 2014-12-31 990EZ 2014-01-01 383207136 National Neutropenia Network NATI 5172940736 US PO Box 1693 Brighton MI 48116 Marylee Reeves President/Director 5172940736 2015-05-13 2014 2016-03-07 17:11:31Z X X neutropenianet.org X X 70987 X 49934 20870 0 12 0 0 0 0 0 0 0 0 0 0 171 70987 4473 0 0 24276 0 1748 31756 62253 8734 20532 0 29266 20532 29266 0 0 0 0 20532 29266 0 0 20532 29266 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. Thirty five private patient-physician consultations took place at the 2015 Family Conference. For some patients these meetings resulted in life-changing advice. Attendees also meet others who understand what it's like to live with the rare and often bewildering condition of severe chronic neutropenia. Children enjoy a camp experience where activities centered on their neutropenia 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 2014 Family Conference was well attended with almost fifty children participating in the Kids Kamp. Many of our patients experience major financial challenges when a 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. Thirteen families attended the 2015 Family Conference with the help of hardship grants given to them by the NNN. 4473 48060 With the internet serving as the primary information source for patients seeking knowledge about their neutropenia and guidance on how to manage it, we have upgraded our website neutropenianet.org with important new features. Newly diagnosed patients can sign up for a free information packet complete with a patient handbook authored by expert physicians and a customizable ER card to present to hospital emergency personnel. Information packets are shipped at no cost to all who ask. We have added short videos of expert hematologists speaking about the diagnosis and treatment of chronic neutropenia. Patients are invited to share their stories which we post for others to read. The firsthand knowledge of the struggle other patients face gives comfort and eases the isolation that comes from living with an extremely rare disease. We are continuing with our Peer Support program linking patients with peer support volunteers who have participated in a training program. We respond personally to hundreds of inquiries from patients and families seeking specific information or guidance related to their neutropenia. In 2014 we had over 23,000 new visitors to our website with average page sessions nearly two minutes. Nearly 6,000 returning visitors spent an average of 2.55 minutes per visit. For some patients their visit to our website opens up a new path for them, one that leads to medical information that changes their life. 0 571 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. 0 2036 50667 Lucy Lyman Director 1 0 0 0 Kate Bottiger Chairman 1 0 0 0 Sharon White Secretary 1 0 0 0 Rajan Lakhia Director 1 0 0 0 Krista Moroder Director 1 0 0 0 Mariel Lewis Director 2 0 0 0 Marylee Reeves Executive Director 25 14977 0 0 Taylor Carlton Treasurer 1.5 0 0 0 Ron Bloxham Director 1 0 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 35743 42236 52718 3069 49934 183700 4575 8280 8385 0 21041 42281 40318 50516 61103 3069 70975 225981 225981 29 30 35 16 12 122 29 30 35 16 12 122 40347 50546 61138 3085 70987 226103 0.99946 0.99933 0.00054 0.00067 X Form 990-EZ, Part I, Line 8 Sale of misc. items at Family Conference Form 990-EZ, Part I, 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. We gave financial assistance grants to thirteen families. Form 990-EZ, Part I, Line 16 Other expenses include: primarily conference costs as well as website management, office supplies, patient support programs.