2023-07-25T10:26:20-04:00 2022-12-31 020644478 Wagner & Company CPA 1655 W Market St Suite 260 Akron OH 44313 990 2022-01-01 010771966 Fibromuscular Dysplasia Society of America Inc FIBR 26777 Lorain Road STE 311 North Olmsted OH 44070 Bradley Daar President 2168342410 2023-07-25 false Bradley Daar Steven Wagner P00027993 3308641550 0 00 AAL1 IAL1 2022 2023-04-26 12:10:37Z FMDSA 142247 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 3 6 0 0 202598 142236 0 22 11 0 202620 142247 50000 50000 0 69851 76440 2375 14849 37895 33874 157746 162689 44874 -20442 199366 175125 6433 2634 192933 172491 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 50214 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. Over the past year enrollment slowed due to the pandemic. We ended the year with over 3,750 participants in the registry.Researchers have identified genetic variants that are associated with FMD. The genes PHARCTR1, ATP281, LRP1, and LIMA1. In 2022, Ottowa Hospital in Ontario Canada became our first international center and for this reason the name of the registry was changed to The North American Registry for Fibromuscular Dysplasia. 28291 Patient Support:Patient support is a large program, due to the increase in patients diagnosed with FMD. 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 YouTube channel We offer FMD materials in Spanish and Japanese and work with our international colleagues who offer materials in many languages. Finally, FMDSA 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. 22385 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 13613 Healthcare Professional Education Program:Prior to the pandemic, we educated medical professionals worldwide at national and international meetings, hospital led conferences, Grand Rounds and podcasts. Due to the pandemic meetings that were not cancelled were mostly held virtually but they were just as successful. In 2022 we participated in one in person meeting and that was the Kentucky Neuroscience Expo. The result of this program is greater awareness of FMD within the medical community, improved medical expertise for patients, and development of critical partnerships that help spur research activity. We also maintain 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. We have seen a direct correlation between See additional info on Schedule O. 11440 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. 7306 Annual Conference: The annual conference was cancelled in 2022 due to the pandemic. During this time, we increased the amount of Zoom meetings offered for free to patients around the world. Mtgs and conferences are held to educate patients and medical professionals on the treatment and latest research findings. The conference brings together FMD patients, those who have had spontaneous coronary dissection (SCAD), caregivers and medical professional and provides an opportunity for patients to meet others also affected, this opportunity is one of the biggest draws. FMDSA hosts a separate meeting with 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. There is no other meeting in the world where so many FMD patients have had the opportunity to participate in research. 2390 Website Education: One of our most important charters is to educate patients and family about FMD. We launched a new website in 2021. We offer educational materials, videos, a research section and contacts for patients worldwide. 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 medical articles and abstracts. The FMDSA website also offers 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. FMDSA is the recognized leader for FMD support and resources. 34749 135639 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 7 7 true false false false false false false true true false false false true true true true true true true false X Pamela Mace 2168342410 26777 Lorain Road North Olmsted OH 44070 X Allison Gaines Director at large 2.00 0.00 X 0 0 0 Cathlin Jamison Director at large 16.00 0.00 X 0 0 0 Jazette Vicedor Director-at-Large 1.50 0.00 X 0 0 0 Christi Eberhardt Director at Large 0.50 0.00 X 0 0 0 Rochelle DesRochers Director at Large 10.00 0.00 X 0 0 0 Bradley Daar President 1.00 0.00 X X 0 0 0 Rosie Miklavcic 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 142236 142236 11 11 142247 11 0 0 50000 50000 71008 63790 4337 2881 5432 4940 298 194 6386 612 5746 28 2375 2375 5018 4120 525 373 4292 3605 226 461 3614 3146 468 1632 1632 57 57 2617 1575 969 73 Bank and merchant fees 2473 43 2430 State Registration fees 2458 2458 Misc software 4359 1251 3108 Website 968 968 162689 135639 12201 14849 89645 65393 109721 109732 199366 175125 6433 2634 6433 2634 X 192933 172491 192933 172491 199366 175125 -20442 0 X false false false X 175608 210821 147225 202598 142236 878488 8430 13921 3702 26053 184038 224742 150927 202598 142236 904541 904541 15 171 39 22 11 258 15 171 39 22 11 258 184053 224913 150966 202620 142247 904799 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 50000 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.