2021-10-13T10:33:12-04:00 2020-12-31 020644478 Wagner & Company CPA 1655 W Market St Suite 225 Akron OH 44313 990 2020-01-01 010771966 Fibromuscular Dysplasia Society of America Inc FIBR 26777 Lorain Road STE 311 North Olmsted OH 44070 Bradley Daar President 2168342410 2021-10-04 true Bradley Daar Steven Wagner P00027993 3308641550 0 00 AAL1 IAL1 2020 2022-09-23 18:48:47Z FMDSA 150966 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. 11 11 2 0 0 210821 147225 13921 3702 171 39 0 224913 150966 41250 51666 0 72189 72874 0 18567 59588 29864 173027 154404 51886 -3438 154206 161979 2709 13920 151497 148059 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 55980 Patient Registry: In 2007, the Fibromuscular Dysplasia Society of America (FMDSA) began a data registry with the goal of increasing understanding of FMD. The 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 registry. The first patient was entered in 2009. Over the last year, enrollment in the registry increased from 2675 patients to 3018 patients at the end of 2020. We currently have 17 registry centers constituting the largest FMD registry. Seattle Childrens Hospital and the University of Colorado joined the registry in 2020. Our goal is to continue enrolling patients and adding additional centers. The registry data helped us to learn more about FMD, how to treat the disease and has driven research hopefully leading to a cure. 21418 Patient Support:As we spread awareness, and see a drastic increase in diagnosed patients, patient support becomes a larger part of our responsibility. Due to the demand, we have continued to grow the Volunteer Support Network. These volunteers have been identified in the US and internationally. Many groups have evolved to the point of holding local meetings. We also offer support through social media platforms including Inspire, Instagram and Facebook where we have thousands of patients participating. We are also active on Twitter allowing patients, clinicians and physicians to communicate. We continue to add FMD materials and videos to our website and patient toolbox. We offer FMD materials in Spanish and Japanese and work with our international colleagues who offer materials in several other languages. Finally, we continue to participate in patient meetings throughout the US and internationally, offering guidanace and resources to patients. 16493 Public Awareness Program:This program was initiated in July 2005 as a Grass Roots Awareness Program. We help patients educate their family, friends and healthcare providers about FMD with material provided by FMDSA. We have many 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 Public Awareness Program also includes educational work with media outlets, other organizations, journals, speaking engagements and articles. We also offer live Zoom meetings. 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 7289 Healthcare Professional Education Program:This program combines attending medical conferences and presenting within hospital environments and is a major focus of FMDSA and has been an avenue to educate thousands of medical professionals. The result is a greater awareness of FMD within the medical community, improved medical expertise for patients, and development of critical 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 containing all the information 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. Unfortuntely, in 2020, our 13th annual meeting was postponed due to COVID. See additonal info on Schedule O. 6193 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. 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 forum 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 2020, the meeting was postponed due to COVID. 4256 FMD Research: FMDSA did not directly fund any research grants in 2020 aside from sponsoring The United States Registry for Fibromuscular Dysplasia, 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. 2094 Website Education: One of our most important charters is to educate patients and family about FMD. 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. The awareness, education, and research happening worldwide is a direct result of what FMDSA started in 2003. 19832 113723 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 11 11 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 Christi Eberhardt Director at Large 0.50 0.00 X 0 0 0 Molly Clark Director at Large 4.00 0.00 X 0 0 0 Rochelle DesRochers Director at Large 15.00 0.00 X 0 0 0 Sally Albrigo Director at Large 0.50 0.00 X 0 0 0 Rosie Miklavcic Director at Large 1.00 0.00 X 0 0 0 Claudia Kime Director at Large 4.00 0.00 X 0 0 0 Lisa Foster Director at Large 0.50 0.00 X 0 0 0 Dawn Marisch Director at Large 0.50 0.00 X 0 0 0 Bradley Daar President 3.00 0.00 X X 0 0 0 Carol Rogers Vice President 2.00 0.00 X X 0 0 0 Virginia Edleman Secretary 4.50 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 147225 147225 Annual MeetingConf 541900 3702 3702 3702 39 39 150966 3741 0 0 51666 51666 67695 49670 6929 11096 5179 3800 530 849 4146 4146 6108 1715 4283 110 3300 3300 5957 5957 2378 2378 Bank and merchant fees 1279 548 731 State Registration fees 3500 3500 Misc software 3196 915 2281 154404 113723 22114 18567 32456 52291 79649 109688 24567 2674 14860 154206 161979 2709 20 13900 2709 13920 X 151497 148059 151497 148059 154206 161979 -3438 0 X true X false false X 161377 126926 175608 210821 147225 821957 8207 11520 8430 13921 3702 45780 169584 138446 184038 224742 150927 867737 867737 52 21 15 171 39 298 52 21 15 171 39 298 169636 138467 184053 224913 150966 868035 0.99970 0.99960 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 51666 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:In 2020, before the pandemic, we educated medical professionals worldwide at the International Stroke Conference held in California. From there, we participated in the FMD/SCAD Symposium at Emory Hospital in Atlanta, Georgia. In addition, medical advisory board members continue to participate in medical conferences and grand rounds presenting on FMD. 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 patient 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. Unfortunately, in 2020, the marathon was cancelled due to COVID. 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.