2020-06-03T15:11:51-04:00 2019-12-31 020644478 Wagner & Company CPA 1655 W Market St Suite 225 Akron OH 44313 990 2019-01-01 010771966 Fibromuscular Dysplasia Society of America Inc FIBR 26777 Lorain Road North Olmsted OH 44070 Bradley Daar President 2168342410 2020-05-30 true Steven Wagner P00027993 3308641550 162.155.82.242 2020-06-03 15:16:45 3460242020155aqctutg 2020-06-03 P B28E40A65CD5DE0F5E9082A0F494057F90CF0075 B28E40A65CD5DE0F5E9082A0F494057F90CF0075 2019 2020-09-23 17:36:50Z FMDSA 224913 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. 7 7 2 0 0 175608 210821 8430 13921 15 171 0 184053 224913 45000 41250 0 69922 72189 0 17952 48460 59588 163382 173027 20671 51886 104964 154206 5353 2709 99611 151497 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 47100 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 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 is the coordinating center for the FMD Registry. The first patient was entered into the database in 2009. We currently have 15 registry centers constituting the largest FMD Registry in the world. Our goal is to continue enrolling patients and adding additional centers. 4 more centers have recently expressed interest and are up for consideration. The data from the registry helps us to learn more about FMD, how to treat the disease and drive research hopefully leading to a cure. In 2019, the International Consensus on Fibrmuscular Dysplaisia was published. 32574 Annual Conference: FMDSA conferences are held to educate patients and medical professionals on the latest data being released. Attendance grows annually, attendees being: newly diagnosed patients, those who have had spontaneous coronary dissection (SCAD), caregivers and medical professionals interested in learning about FMD. In addition to learning more about FMD, 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 2019, we held our 12th Annual Meeting. 18434 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 local patients. Many have grown to the point of having regular local meetings. We continue to add FMD materials and videos to our website and Patient Toolbox. We have participated in many patient meetings throughout the United States and internationally. In 2019, we presented in Vancouver Canada, Warsaw Poland, Vanderbilt University, San Diego and more. 15609 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 10895 FMD Research: FMDSA did not directly fund any research grants in 2019 aside from the $41,250 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. 6867 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 2019, we held our 12th annual meeting. See additonal information on Schedule O. 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. 33371 131479 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 true false false false false false false false false false false false false false false false false false false false false true 0 0 true 2 true false false false false false false false false false false false false false false false false false X 7 7 false false false false false false false true true false false true true true true true true true true 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 Lisa Foster Director at Large 2.00 0.00 X 0 0 0 Cindy Basque Treasurer 8.00 0.00 X X 0 0 0 Christi Nelson Director at Large 1.00 0.00 X 0 0 0 Molly Clark Director at Large 2.00 0.00 X 0 0 0 Pamela Mace Executive Director 60.00 0.00 X 0 0 0 0 0 0 0 false false false 210821 210821 Annual MeetingConf 541900 13921 13921 13921 171 171 224913 14092 0 0 41250 41250 67059 49141 8412 9506 5130 3718 644 768 4056 4056 9586 5834 3408 344 3111 3111 12874 12153 721 19333 19333 2162 2162 Bank and merchant fees 2009 50 143 1816 State Registration fees 3000 3000 Misc software 3457 939 2518 173027 131479 23596 17952 74342 32456 30622 79649 24567 2674 14860 104964 154206 5353 2709 5353 2709 X 99611 151497 99611 151497 104964 154206 51886 0 X true X false false X 150718 161377 126926 175608 210821 825450 18972 8207 11520 8430 13921 61050 169690 169584 138446 184038 224742 886500 886500 53 52 21 15 171 312 53 52 21 15 171 312 169743 169636 138467 184053 224913 886812 0.99960 0.99980 0.00000 0.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true MCORRP University of Michigan 24 Frank Lloyd Wright Drive Ann Arbor MI 48106 41250 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 sign the Volunteer Handbook which discusses various policies, including the code of conduct, conflict of interest and whistleblower policies. 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 started 2019 with the publication of the First International Consensus Paper on Fibromuscular Dysplasia. This paper was the dirct result of the International Symposium Revisiting Fibromuscular Dysplasia & Related Vascular Disorders held in Brussels in 2018. From the paper, consensus reseasrch points and research priorities were identified. This will help physicians in the diagnosis and treatment of patients. In August 2019 we participated in the second Vancouver SCAD Conference which included educational presentations for physicians and researchers, as well as a breakout session for both FMD patients and those who have experienced spontaneous coronary artery dissection (SCAD). The awareness, education and research happening around the world is a direct result of what FMDSA started in 2003. In November 2019, we were honored to participate in the International Symposium of Fibromuscular Dysplasia & Related Vascual Disorders, held in Warsaw. This event also hosted separate paeients meetings where we were able to offer guidance and resources to the patients in Poland. 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. In 2019, FMDSA was invited to participate in two sperate SCAD Research events to raise awareness of FMD. In many patients who have experienced a spontaneous coronary artery dissection (SCAD) they have been diagnosed with underlying FMD. As stated above, in August 2019, we participated in the second, Vancouver SCAD Conference and in November, we were honored to participate in the International Symposium of Fibromuscular Dysplasia & Related Vascular Disorders, held in Warsaw, Poland. These international research meetings continue to grow and are very well attended. Physicians and researchers from around the world attend and share their knowledge, and together they identify research priorities.