Click here to find out more about NMO and GJCF.<\/span><\/a><\/p>\n1.) What does it mean to you personally to be a patient organization serving the rare community?<\/b><\/p>\n
The decision to create The Guthy \u2013 Jackson Charitble Foundation came from a personal family crisis. In June 2008, Ali Guthy, daughter of Victoria Jackson and Bill Guthy, was officially diagnosed with Neuromyelitis Optica Spectrum Disorder (NMO \/ NMOSD). Searching for a cure for Ali means searching for a cure for everyone living with NMO. <\/span><\/p>\nHoward Weiner, M.D., who is a Professor of Neurology, at Harvard\u2019s Brigham and Women\u2019s Hospital says, \u201cA disease may be rare, but if it\u2019s in your family it\u2019s not very rare.\u201d <\/span><\/p>\nAs a small team with a big responsibility, we have the privileged opportunity to make a positive impact for NMO patients. Not one day goes by when we don\u2019t appreciate the importance of our role. We are in contact with many people who are in difficult situations because of NMO. Yet, amidst the struggle, we have the rare chance to see so much courage displayed by the entire community. Serving such an impressive and inspiring group of people is an incredible experience for us. <\/span><\/p>\n2.) What do you find your patient community values most from your organization?<\/b><\/p>\n
Our primary mission is to fund research to find the ultimate answer to NMO: a cure. We have invested $40 million, funded 50 research projects, and established the only NMO-dedicated biorepository supporting scientific and clinical research, as well as other projects dedicated to NMO research. <\/span><\/p>\nWe are also committed to providing information about and resources for NMO. \u00a0We host annual international Roundtable Conferences, Patient Days and Symposia. We sponsor an International Clinical Consortium (ICC) and an International Panel on NMO Diagnosis (IPND). Our website offers information about NMO, along with an online media library featuring NMO research papers and abstracts, over 100 videos, literature, and ways to advocate for NMO. <\/span><\/p>\nOur resources and events offer information and unique insight to NMO that never existed. \u00a0We receive emails and calls from people all over the world letting us know that we give them hope. Simply knowing we exist, that people are not alone on their journeys with NMO, gives strength and determination to keep fighting. They know we\u2019ve brought NMO research back to life, and we\u2019ve been told that where they had lost hope, their hope is renewed. \u00a0<\/span><\/p>\n3.) What are some of the challenges your organization has faced?<\/b><\/p>\n
When we started in 2008, we had to build from the ground up. \u00a0There wasn\u2019t a centralized source of information, and research was as rare as the disease. Simply finding clinicians or researchers who knew anything about NMO proved extremely challenging. Patients were fragmented, living in pockets, separated by its rarity and lack of support. We have had a global vision: to foster a working environment to work toward finding a cure, while ensuring the science was critical path. To accomplish this, we had to find clinicians and researchers, gain their trust and provide opportunities for them to work with each other. \u00a0We provided the springboard to unify patient communities worldwide, while offering them unique access to expert NMO researchers and clinicians. <\/span><\/p>\nDiagnosing NMO is not easy. In fact, research is developing at an accelerated rate. \u00a0Recently, the <\/span>diagnostic criteria was recently updated<\/span> by an <\/span>International Panel of NMO Diagnosis<\/span> made up of 18 NMO experts from around the world. \u00a0Mayo Clinic clinicians Drs. Dean Wingerchuk and Brian Weinshenker state that \u201cit is likely that compared to using previous NMO criteria, the incidence and prevalence of NMOSD will roughly\u00a0double the number of patients\u00a0with NMO-like illness.”<\/span><\/p>\nNMO is a tough disease. Symptoms can develop over a period of just a few hours, leaving people blind, paralyzed, or both. The sense of urgency is palpable throughout the entire community. Patients need to receive proper diagnoses and appropriate treatment in order to increase the chances of best possible outcomes. <\/span><\/p>\nThere are still many medical professionals who have not heard of NMO and don\u2019t know how to diagnose, much less treat it. Until recently, NMO was thought to be a variation of MS. \u00a0However, recent discoveries indicate that NMO and MS are distinct diseases. Many still do not know that there is a <\/span>biomarker test for NMO called the NMO Immunoglobulin Antibody test (NMO-IgG)<\/span> that clinicians can order. \u00a0We\u2019re faced with the challenge of educating the medical community about NMO. \u00a0Many <\/span>NMO Advocates<\/span> have joined the cause educating clinicians, nurses and physical therapists all over the world. \u00a0\u00a0<\/span><\/p>\nWe still have a long way to go in this disease regarding research and advocacy, and we face each challenge with one foot in front of the other, staying the course to a cure. <\/span><\/p>\n4.) What has been your most successful awareness campaign and\/or fundraising event?<\/b><\/p>\n
When we established our foundation, NMO was largely referred to as Devic\u2019s Disease, and the research landscape was nearly barren. We needed to ignite scientific discovery to make a meaningful impact for NMO patients. Forward progress in the labs meant forward progress for the disease. To that end, we didn\u2019t begin with advocacy, we began targeting clinicians and researchers. We hosted our first NMO Roundtable Conference just five months after we were up and running. \u00a0It was in a small conference room in Los Angeles, CA, with about 30 attendees, only half of which were actual researchers and clinicians. These NMO and MS experts from all over the US were in the same room talking with each other, starting the process of working together. Some of them had heard of each other, but had never met before. That meeting created the spark of research possibilities for NMO and established us as a foundation dedicated to curing this disease. <\/span><\/p>\nIn 2009, we hosted our first NMO Patient Day that aimed at educating the patient community about the latest basic science and medical research. \u00a0It was the first time people living with NMO had ever met others with NMO, offering day-long access to dialogue with NMO experts. It was very emotional for everyone in the room. <\/span><\/p>\nThose first conferences marked a new beginning for the entire NMO community. \u00a0We think of NMO as \u201cthe little disease that could.\u201d <\/span><\/p>\n5.) Do you have any stories from NMO patients that you would like to share?\u00a0<\/b><\/p>\n
There are so many courageous and amazing people who face NMO who are not just surviving, but really living with the disease and making life work for the better. They range from patients and caregivers to family and friends. <\/span>Our website features inspiring stories of the NMO experience<\/span>. \u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"This week, the Guthy-Jackson Charitable Foundation is in the member spotlight!<\/p>\n","protected":false},"author":1,"featured_media":12041,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[190],"tags":[836,835,837,834],"class_list":["post-58655","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-news","tag-ms","tag-nmo","tag-nmosd","tag-the-guthy-jackson-charitable-foundation"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58655","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58655"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58655\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12041"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58655"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58655"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58655"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}