2015-11-04T09:36:34-05:00 2014-12-31 020644478 Wagner & Company CPA LLC 1655 W Market Street Ste 525 Akron OH 44313 990 2014-01-01 010771966 Fibromuscular Dysplasia Society of America Inc FIBR 20325 Center Ridge Road Rocky River OH 44116 Bradley Daar President 2168342410 2015-11-04 false Steven Wagner P00027993 3308641550 2014 2016-04-25 22:37:26Z FMDSA 122702 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. 12 12 2 0 0 102956 116345 12838 6308 30 49 0 115824 122702 39775 42359 0 39397 45213 0 4084 30487 29301 109659 116873 6165 5829 57148 52149 10931 103 46217 52046 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. 48026 International Patient Registry: The patient registry has been developed in cooperation with the University of Michigan Health System's Cardiovascular Outcomes Research and Reporting Program (M-CORRP). The purpose of the registry is to collect data on FMD patients seeking treatment at one of 13 FMD Regisry Centers in the United States. The database grew in 2014 to almost 1,000 patients being enrolled. Our FMD registry is the largest registry in the world collecting data on patients diagnosed with FMD. In 2014, we added additional Patient Registry Centers in the US and our goal is to continue adding more centers within and outside the USA. The data base is helping us to learn more about the disease and will help us to one day set protocols for treating the disease and lead us to hopefully finding a cure. Several articles were published in medical journals in 2014 with data from the registry and several abstracts with data were presented at medical conferences. 17895 Annual Conference: FMDSA holds it's conferences in a affort to educate patients and medical professionals on the latest data being released 9188 Healthcare Professional Education Program:This program is a combination of attending medical conferences and presenting training classes 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 research activity. We have also created 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. 7084 Patient SupportAs we spread awareness, patient support is becoming a larger part of our responsibility as an organization. A signficant percentage of our paid employee time is spent assisting patients. 6139 FMD ResearchFMDSA did not directly fund any research grants in 2014. 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. 3778 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 laymen's terms 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. 1889 Website Education: One of our most important charters is to educate patients and family about FMD. 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 papers. Our Honcode certification is a stamp of approval that verifies we are an unbiased organization providing only medical certified information. 18890 93999 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 true false false false false false false false false false false false false false false false false false false false false true 0 1 true 2 true false false false false false false false false false false false false false false false X 12 12 false false false false false false false true true false false true true true true true true true true false AA X Pamela Mace 2168342410 20325 Center Ridge Road Rocky River OH 44116 X Dr Glen Graham Director-at-Large 1.00 0.00 X 0 0 0 Bradley Daar President 3.00 0.00 X X 0 0 0 Sara Bailey Director-at-Large 2.00 0.00 X 0 0 0 Carol Rogers Director-at-Large 2.00 0.00 X 0 0 0 Jodi Roth Director-at-Large 5.00 0.00 X 0 0 0 Maureen Womack Secretary 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 116345 116345 Annual MeetingConf 541900 6308 6308 6308 49 49 122702 6357 0 0 42359 42359 31441 24524 4402 2515 13772 10742 1928 1102 1250 1250 1095 272 517 306 80 80 2700 2700 14498 14453 45 1425 105 1309 11 Bank and merchant fees 1162 1162 State Registration fees 2543 2543 4548 1464 2934 150 116873 93999 18790 4084 37119 36047 20029 16102 57148 52149 10931 103 10931 103 X 46217 52046 46217 52046 57148 52149 5829 0 X false false false X 123488 123766 106541 115794 116349 585938 4895 22199 20033 6305 53432 128383 145965 126574 115794 122654 639370 5548 14606 51073 42554 113781 5548 14606 51073 42554 113781 525589 403 201 90 30 49 773 403 201 90 30 49 773 128786 146166 126664 115824 122703 640143 0.82100 0.78000 0.00000 X true MCORRP The Regents of UM 24 Frank Lloyd Wright Drive Ann Arbor MI 48106 42359 Cash Patient registry Amended return infomation Payroll and payroll expensses were not allocated to the programs where the expenses were incurred. Also, substantial donors were omitted from the original return. Organizational document changes Part VI line 4 Added to the specific functions of the organziation: To provide emotional support to patients and family members through online social media and direct contact. 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 reviewed and approved by the board of directors. Other officer or key employee compensation Part VI line 15b The pay of the executive director is reviewed and approved 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