2019-07-16T15:52:19-04:00 2018-12-31 020644478 Wagner & Company CPA 1655 W Market St Suite 225 Akron OH 44313 990 2018-01-01 010771966 Fibromuscular Dysplasia Society of America Inc FIBR 26777 Lorain Road North Olmsted OH 44070 Bradley Daar President 2168342410 2019-06-13 true Steven Wagner P00027993 3308641550 162.155.82.242 2019-07-16 15:54:55 3460242019197b4uhvfo 2019-07-16 P B28E40A65CD5DE0F5E9082A0F494057F90CF0075 B28E40A65CD5DE0F5E9082A0F494057F90CF0075 2018 2019-02-21 02:37:17Z FMDSA 184053 false X www.fmdsa.org X 2003 DE FMDSA is a public health charity working towards better diagnosis and treatment of Fibromuscular Displasia (FMD). We do this by building awareness of FMD, funding research activities, providing patient support, and educating patients and the healthcare community. 5 5 3 0 0 126926 175608 11520 8430 3033 15 0 141479 184053 40416 45000 0 76806 69922 562 0 12626 41608 48460 159392 163382 -17913 20671 79099 104964 159 5353 78940 99611 FMDSA is a public health charity working towards better diagnosis and treatment of Fibromuscular Displasia (FMD). We do this by building awareness of FMD, funding research activities, providing patient support, and educating patients and the healthcare community. false false 61994 Public Awareness Program:This program was initiated in July 2005 as a Grass Roots Awareness Program where we and patients educate their family, friends and healthcare providers about FMD with material provided by FMDSA. We have a number of valuable resources on our website to help communicate FMD in laymens terms, including a Public Service Announcement, as well as more in depth information for physicians that can help bridge the gap and build a better relationship between patient and physician. The PAP also includes educational work with media outlets, other organizations, journals speaking engagements and articles. We also offer live web chats and spree chats in conjunction with the Cleveland Clinic that are made public. There is rarely a day that goes by that we are contacted by a newly diagnosed patient. We have seen the diagnosis rate grow in direct proportion to our programs. See additional info on Schedule O 45000 Patient Registry: In 2007, the Fibromuscular Dysplasia Society of America (FMDSA) began a data registry with the goal of increasing understanding of the disease and its treatment. The specific goals of this registry are to identify patient characteristics associated with FMD, potential markers of the disease, and commonly used imaging and treatment modalities. Michigan Clinical Outcomes Research and Reporting Program (MCORRP) is the coordinating center for the FMD Registry. Beginning with 7 sites, the first patient was entered into the database in 2009. In 2018, Texas Tech University joined the registry becoming the 15th center to participate. To date 2299 patients have been enrolled. Our registry is the largest FMD Registry in the world and our goal is to continue enrolling patients and adding additional centers. The data from the registry is helping us to learn more about FMD, how to treat the disease and drive research which will hopefully lead to a cure. 21047 Annual Conference: FMDSA conferences are held in an effort to educate patients and medical professionals on the latest data being released. Attendance grows annually with more attendees being newly diagnosed patients. Caregivers and medical professionals interested in learning about FMD are also in attendance. In addition to learning more about the disease the annual meeting provides an opportunity for patients to meet others also affected, this opportunity is one of the biggest draws to the meeting. We host a separate meeting with all of the investigators that are participating in the patient registry to go over updates, current and future research projects. The meeting has provided a platform for different research projects including blood draws, saliva collection and quality of life studies. There is no other meeting in the World where so many FMD patients have had the opportunity to participate in research. In 2018, we held our 11th Annual Meeting. 1408 Patient SupportAs we spread awareness and see a drastic increase in the number of patients being diagnosed, patient support has become a large part of our responsibility as an organization. Due to the demand on our executive director and volunteers, we have continued to grow the Volunteer Support Network. This is a group of volunteers that have been identified in each state that can assist with patients local to them. Many have grown to the point of having regular local meetings. 236 FMD Research: FMDSA did not directly fund any research grants in 2018 aside from the $45,000 that went to funding the patient registry which produces research data that gets published in major medical journals. This category includes expenses related to the time we spend talking with candidate reserachers and follow up on medical data as well as time spent on the coordination of research projects. 145 Healthcare Professional Education Program:This program is a combination of attending medical conferences and presenting within hospital environments. The program is a major focus of FMDSA and has been an avenue to educate literally thousands of medical professionals. The result is a greater awareness of FMD within the medical community, improved medical expertise for patients, and development of key partnerships that are helping us spur more research activity. In addition to our Physician page, we have also maintained a research Network Page on the website that has all the information being published from the patient registry and other researchers studying FMD. There are also PowerPoint presentations and videos available for health care providers. We have seen a direct correlation between our awareness and educational programs to the increase in patients getting diagnosed. In 2018, we held our 11th annual meeting. See additonal information on Schedule O. 45 Website Education: One of our most important charters is to educate patients and family about FMD and we have become the recognized leader around the world for FMD support and resources. Our website continues to grow exponentially since inception with patients, family members and physicians from all over the world using our resources, especially our new Patient and Physician tool boxes. FMDSA is the premier resource of FMD information for the layperson and an excellent place for physicians to easliy find medical articles and abstracts. The FMDSA website also offers patient resources and community events for those wanting to get more involved. 1834 129875 true true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true 0 0 true 3 true false false false false false false false false false false false false false false false false false X 5 5 false false false false false false false true true false false true true true true true true true true false false X Pamela Mace 2168342410 26777 Lorain Road North Olmsted OH 44070 X Bradley Daar President 3.00 0.00 X X 0 0 0 Carol Rogers Director-at-Large 2.00 0.00 X 0 0 0 Maureen Womack Secretary 5.00 0.00 X X 0 0 0 Mimi Petersen Director at Large 2.00 0.00 X 0 0 0 Cindy Basque Treasurer 2.00 0.00 X X 0 0 0 Pamela Mace Executive Director 60.00 0.00 X 0 0 0 0 0 0 0 false false false 175608 175608 Annual MeetingConf 541900 8430 8430 8430 15 15 184053 8445 0 0 45000 45000 64813 51168 8653 4992 151 151 4958 3914 662 382 3250 3250 3397 2215 1182 1560 1560 5588 5356 232 22022 22022 2011 2011 Bank and merchant fees 2328 537 1791 State Registration fees 3744 3744 Contract Help 297 297 Misc software 1717 1717 2546 200 2346 163382 129875 20881 12626 48493 74342 30606 30622 79099 104964 159 5353 159 5353 X 78940 99611 78940 99611 79099 104964 20671 0 X true X false false X 116349 150718 161377 126926 175608 730978 6305 18972 8207 11520 8430 53434 122654 169690 169584 138446 184038 784412 784412 49 53 52 21 15 190 49 53 52 21 15 190 122703 169743 169636 138467 184053 784602 0.99980 0.94030 0.00000 0.00000 X true MCORRP University of Michigan 24 Frank Lloyd Wright Drive Ann Arbor MI 48106 45000 Cash Patient registry Form 990 governing body review Part VI line 11 Form 990 is reviewed by the Chairperson and distributed electronically to each board member prior to signature and transmission to the IRS. Conflict of interest policy compliance Part VI line 12c Employees and directors of FMDSA are required to review and sign the FMDSA Code of Ethics and Professional Conduct which outlines the various policies of FMDSA including the conflict of interest and whistleblower policy. CEO executive director top management comp Part VI line 15a The pay of the executive director is determined by the board of directors. Other officer or key employee compensation Part VI line 15b The pay of the executive director is determined by the board of directors. Governing documents etc available to public Part VI line 19 The governing documents can be obtained through proper request to the organziation through contact information available on the website. General explanation attachment Other states registered:Alabama AL08-351AlaskaArizona 25431ArkansasCalifornia CT147629Colorado 20083005977Florida CH16556HawaiiIllinois 01-105,443Kansas 422-044-8Kentucky 6211Maryland 13970Massachusetts 48394Michigan MICS 28540MinnesotaMissouri CO-157-08New Hampshire 17337 Additional states registered:New Jersey CH-30785-00New MexicoNew York 20-47-45North Carolina SL004981North Dakota 9150Ohio 03-4369Oklahoma 4312203627Oregon 38826Pennsylvania 36253Rhode Island 97-3568South Carolina P15624Tennessee CO10684Utah 7096298-CHARVirginiaWashington 25347West VirginiaWisconsin 10631-800 Addition to Part III, Health Care Professionals:We were honored to participate in the International Symposium Revisiting Fibromuscular Dysplasia & Related Vascular Disorders, in Belgium in February of 2018. The meeting brought in researchers from all over the world and the discussions lead to the First International Consensus Paper on Fibromuscular Dysplasia. In September, 2018 we participated in the first, Vancouver SCAD Conference which included presentations and a breakout session for patients with FMD and SCAD. This well attended meeting brought in physicians and researchers from around the world and patients/care givers were also able to participate. All of the awareness, education and research happening around the world is a direct result of what FMDSA started in 2003. Additional info to Part III, Public Awareness:In addition, we also participate in events such as the Cleveland Marathon which helps increase awareness of the disease as well as to raise funds to support our programs. Additonal info to Part III: Research: In 2018 we were honored to participate in two seperate International meetings. First in February, 2018 at the International Symposium Revisiting Fibromuscular Dysplasia & Related Vascular Disorders, in Brussels, Belgium. The meeting brought in researchers from all over the world and the discussions lead to the First International Consensus Paper on Fibromuscular Dysplasia. In September, 2018 we participated in the first, Vancouver SCAD Conference which included presentations and a breakout session for patients with FMD and SCAD. (Continued) Additional info to Part III: Research (continued):This was another well attended meeting bringing in physicians and researchers from around the world and patients/care givers were also able to participate in some of the meeting sessions. All of the awareness, education and research happening around the world is a direct result of what FMDSA started in 2003.