2022-06-24T14:08:41-04:00 2021-12-31 020644478 Wagner & Company CPA 1655 W Market St Suite 225 Akron OH 44313 990 2021-01-01 010771966 Fibromuscular Dysplasia Society of America Inc FIBR 26777 Lorain Road STE 311 North Olmsted OH 44070 Bradley Daar President 2168342410 2022-06-24 true Bradley Daar Steven Wagner P00027993 3308641550 0 00 AAL1 IAL1 2021 2022-09-23 18:48:47Z FMDSA 202620 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 147225 202598 3702 0 39 22 0 150966 202620 51666 50000 0 72874 69851 0 19490 29864 37895 154404 157746 -3438 44874 161979 199366 13920 6433 148059 192933 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 55949 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. The Michigan Clinical Outcomes Research and Reporting Program is the coordinating center for the registry. The first patient was entered into the data base in 2009. Over the last year, enrollment had slowed due to the pandemic. We ended the year with over 3,359 participants in the registry.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. We are hopeful that one day there will be a cure. 16680 Annual Conference: In 2021 we held our first virtual meeting over 900 participants from 21 countries. FMDSA conferences are held to educate patients and medical professionals on the treatment of the disease and the latest research findings. The meeting brings together newly diagnosed FMD patients, those who have had spontaneous coronary dissection (SCAD), caregivers and medical professionals interested in learning. The annual meeting provides an opportunity for patients to meet others also affected, this opportunity is one of the biggest draws. Patients always request more time together. We host a separate meeting with all of the researchers 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. No other meeting worldwode allows so many FMD patients the opportunity to participate. 16445 Patient Support:Patient support is a large program, due to so many patients getting diagnosed with Fibromuscular Dysplasia. Due to the demand, we have continued to grow the Volunteer Support Network. 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 continue to collaborate with international colleagues who offer materials in many languages. Finally, we continue to host and participate in patient meetings but due to the pandemic these meetings have been via Zoom. Patients globally are invited to participate. 9749 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 written materials and videos. 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 6430 Healthcare Professional Education Program:This program combines attending medical conferences and presenting within hospital environments. This program has provided us a platform 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, other researchers and researcher opportunities for patients to participate in. There are also PowerPoint presentations and videos available for health care providers. See additional info on Schedule O. 6409 FMD Research: FMDSA has been sponsoring The United States Registry for Fibromuscular Dysplasia for over a decade. The first participants data was entered into the registry in January 2009. Data from patient experiences is analyzed and used to learn more about the disease. The data has given us a better understanding of Fibromuscular Dysplasia (FMD) and how to treat the disease. In 2021, groundbreaking research identified three new genetic variants that are connected to FMD. The new genes identified are ATP2B1, LRP1, and LIMA1. The awareness, education, and research happening worldwide is a direct result of what FMDSA started in 2003. 3075 Website Education: One of our most important charters is education. We launched a new website in 2021. The website continues to be used by patients, family members and medical professionals from all over the world. FMDSA is the premier resource of FMD information for the layperson and an excellent place for physicians to easily find resources. The FMDSA website also offers patient resources and community events for those wanting to get more involved. 25663 114737 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 2 true false false false false false false false false false false false false false false false false false X 7 7 true 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 Allison Gaines Director at large 0.50 0.00 X 0 0 0 Cathlin Jamison Director at large 0.50 0.00 X 0 0 0 Rochelle DesRochers Director at Large 15.00 0.00 X 0 0 0 Lisa Foster Director at Large 5.00 0.00 X 0 0 0 Bradley Daar President 1.00 0.00 X X 0 0 0 Rosie Miklavcic Treasurer 5.00 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 13900 188698 202598 22 22 202620 22 0 0 50000 50000 64807 47793 7535 9479 5044 3660 577 807 4953 4953 351 122 229 6664 1249 4189 1226 3600 3600 115 20 95 9236 9236 2310 2310 Bank and merchant fees 2033 31 2002 State Registration fees 3000 3000 Misc software 3057 81 2976 Website 2576 2576 157746 114737 23519 19490 52291 89645 109688 109721 161979 199366 20 6433 13900 13920 6433 X 148059 192933 148059 192933 161979 199366 44874 0 X false false false X 126926 175608 210821 147225 202598 863178 11520 8430 13921 3702 37573 138446 184038 224742 150927 202598 900751 900751 21 15 171 39 22 268 21 15 171 39 22 268 138467 184053 224913 150966 202620 901019 0.99970 0.99970 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 Cash Patient registry Officer directors etc family relationship Part VI line 2 The office assistant is the parent of a board member. 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:Prior to the pandemic, we educated medical professionals worldwide at meetings such as the International Stroke Conference, hospital led conferences, Grand Rounds and International research meetings. Due to the pandemic meetings that were not cancelled were held virtually but they were just as successful. 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. In 2021, the marathon was rescheduled from May to October, due to the on-going pandemic but attendance was low.