2024-06-26T09:23:15-07:00 2023-12-31 610567366 CHARLES T MITCHELL CO PLLC 229 W MAIN ST STE 103 FRANKFORT KY 40601 990EZ 2023-01-01 010771966 FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC FIBR 2168342410 26777 LORAIN RD 311 NORTH OLMSTED OH 44070 BRADLEY DAAR President 2024-06-26 true BRADLEY DAAR 999009999 true Greg Miklavcic CPA P00946625 5022277395 2 AAL1 IAL1 FAL1 2023 2023-04-26 12:10:37Z X WWW.FMDSA.ORG X X 159378 X 147939 11428 11 0 0 0 0 159378 45833 79009 13182 3599 1037 44725 187385 -28007 172491 144484 X 175125 145032 175125 145032 2634 548 172491 144484 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. 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. We ended the year with over 4,172 participants in the registry and two new centers joined the registry in 2023 for a total of 20 active registry centers. 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". 45833 Patient Support: Patient support is a large program, due to the increase in patients diagnosedwith 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 Zoom meetings. Patients globally are invited to participate. 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 laymen's 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 mediaoutlets, 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 roportion to our programs. See additional info on Schedule O. Heath care professionionals: We educated medical professionals worldwide at meetings such as the International Stroke Conference, Hospital LED Conferences, Grand Rounds and International Research Meetings. The awareness, education and research happening around the world is a direct result of what FMDSA started in 2003. Public Awareness: In addition, we also particpate in events such as the Cleveland Marathon which helps increase awareness as well as to raise funds to support our programs. 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. In 2023 we participated in person meetings including the Society of Vascular Medicine and the the Kentucky Neuroscience Expo. The result of these programs 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 FMD Research: FMDSA has been sponsoring the Registry for 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. The 2023 Annual Conference brought together FMD patients, those who have had spontaneous coronary dissection (SCAD), caregivers and medical professionals. The meeting provides an opportunity for patients to meet others also affected, and that is one of the biggest draws. FMDSA hosts a separate meeting with researchers to go over updates, and current and future research projects. The forum has provided a platform for many 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. 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 supportand resources. 45833 ALLISON GAINES DIRECTOR AT LAR 2.00 0 CATHLIN JAMISON DIRECTOR AT LAR 16.00 0 JAZETTE VICEDOR DIRECTOR AT LAR 1.50 0 CHRISTI EBERHARDT DIRECTOR AT LAR 0.50 0 ROCHELLE DESROCHERS DIRECTOR AT LAR 10.00 0 BRADLEY DAAR President 1.00 0 ROSIE MIKLAVCIC Treasurer 4.00 0 PAM MACE EXECUTIVE DIRECTOR 60.00 0 false false false false false false false 0 0 0 false 0 0 false AL AR AZ CA CO FL HI IN KS KY MA MD MI MN MO NC ND NH NJ NM NY OH OK OR PA RI SC TN UT VA WA WI WV ANITA MEYERS 26777 LORAIN RD NORTH OLMSTED OH 44070 2168342410 false false false false false false false false false false false NONE NONE true X 210821 147225 202598 142236 147938 850818 13921 3702 11428 29051 0 0 0 224742 150927 202598 142236 159366 879869 0 0 879869 171 39 22 11 11 254 0 171 39 22 11 11 254 0 0 224913 150966 202620 142247 159377 880123 0.99970 0.99970 0.00030 0.00030 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Grants and Similar Amounts Paid In Excess of $5,000.1 | Donee's Name: MCORRP UNIVERSITY OF MICHIGAN | Donee's Address: 24 FRANK LLOYD WRIGHT DRIVE ANN ARBOR MI 48106 | Cash Amount Given: $45833 Other Expenses.1002 Office Expenses $517 Other Expenses.1005 Travel $4786 Other Expenses.1007 Conferences, Conventions, and Meetings $25386 Other Expenses.1012 Insurance $1586 Other Expenses.1 SUPPLIES $3875 Other Expenses.2 SOFTWARE $3310 Other Expenses.3 CREDIT CARD FEES $2233 Other Expenses.4 PAYROLL EXPENSES $877 Other Expenses.5 TELEPHONE $802 Other Expenses.7 WEBSITE $497 Other Expenses.8 MISC $469 Other Expenses.9 DUES $290 Other Expenses.11 DONATIONS $50 Other Expenses.12 INTERNATIONAL CONV FEES $29 Other Expenses.13 BANK CHARGES $18 Total Liabilities.1001 Accounts Payable and Accrued Expenses - Beginning $2634 Accounts Payable and Accrued Expenses - Ending $548